January 2010, Facebook: ‘My little guy came home from school today and his daily sheet said that he had been very sweet and wiped the tears of a friend who was crying. I told him, “Spencer…Mommy is so proud of you. Your teachers said that you were very nice today and wiped your friend’s tears when he was sad.” He said, “Yes…I pushed him and he cried. Then, I wiped his tears.” Well…’
Sorry for my absence, folks! Between the holidays, a new job and an upcoming vacation to Disney…blogging has fallen by the wayside! I promise though…I’ll be back in late January with more posts about PANDAS, favorite books and more anecdotes from the life of Mama Panda and company! Can’t wait to tell you more about my life as a stepmom!
I’m honored to have been asked to participate in Anne Bogel’s amazing podcast: What Should I Read Next? I’ve been a huge fan for a couple of years and have listened to every episode so I was incredibly excited to get to be Anne’s guest for Episode 106. We talk about my reading life, how I read with The Dude and Anne makes recommendations for what we can read next…together! I hope you’ll tune in. If you are a book lover or you have kids who love books…this is a great podcast for you! Let me know what you think and feel free to leave any recommendations that YOU might have for me in the comments here or on Anne’s site!
Facebook, August 2012: ‘Funniest moment of the day: Having given him 15 minutes to swim before bedtime (our house has its own pool), we set a timer for the boy. Suddenly the back door flies open…he has decided he needs to poop and is yelling, ‘Stop the clock! Stop the clock!’
So we took our blood draw order from the DO and headed to Nationwide Children’s Urgent Care in Hilliard (highly recommended by our doc as the best children’s phlebotomy staff in the area and I have to agree!) I was very nervous about how it was going to go. How exactly do you get a 4 year old to hold still while a needle is inserted in his arm? If you’ve read the birth story I published over the past two weeks, then you know I’m not the kind of mommy who would be willing to have him restrained so I was just holding my breath and hoping for the best.
I did tell The Dude prior to our arrival at the the Urgent Care that we were going to do a blood draw. One thing that has always been true about him (and never more so than when he is in a flare with PANDAS) is that he needs to be prepared for what is coming. He’s a thinker and doesn’t like to be surprised. While I knew that we would risk the chance that telling him would cause him tremendous anxiety, I also knew my child: if we tried to pull something over on him, it wasn’t going to go well.
Luckily, he’s also a ‘rule follower.’ That’s been to our tremendous advantage throughout his life but particularly with regard to his medical condition. He’s just the type of kid who, if he thinks something is the rule, will do it because he thinks he has to. So telling him that the doctor said he had to do the blood draw to get healthier was definitely impactful. He was scared and asked A LOT of questions. I waited until the day before to tell him (just to minimize his anxiety) and then promised to be answer all of his questions and be with him the whole time.
The ladies who drew his blood were fantastic. They never once suggested that they hold him down or that I should. They let me hold him on my lap and one nurse held out his arm while the other inserted the needle. We kept up a continuous conversation while the blood was being drawn and I reassured him over and over again that we were almost finished. He cried…more out of fear than pain, I think but as soon as it was over, he was fine. It wasn’t nearly as traumatic as I had feared. Since that time, we’ve probably done at least 5 blood draws. We always go to Nationwide Children’s at Hilliard and it gets a little easier every time.
Within a week, we had results from the blood work and they confirmed what we suspected: The Dude had PANDAS. While the blood work is super extensive and confusing (if you are a PANDAS parent and want to know more detail, please email me), the primary indicators that we found were that his Anti-DNase B titers were elevated and that he is heterozygous for the MTHFR C677T genetic mutation. Trust me, I had no idea what that meant either.
As best I can explain, the elevated Anti-DNase B titers were the indication that his body was reacting oddly to Streptococcus A bacteria. While the normal range was 0-100 IU/ml, his blood tested at 409. These titers indicate exposure to a recent strep infection and allowed us to feel confident that the strep exposure was what was causing the tics, OCD, bedwetting and anxiety that he was experiencing.
We were very lucky in this regard. We knew that The Dude had had strep in April…and we noticed his symptoms and suspected PANDAS rather quickly which allowed us to get his blood work analyzed shortly after the onset of his symptoms. Often, parents don’t know anything about PANDAS until years after their child’s symptoms begin and, by the time PANDAS becomes a suspicion, it’s impossible to tell if the child was exposed to strep the onset or not. Often, these kids are treated for years for Tourette’s or mental health issues prior to finding a doctor who suspects PANDAS. Even then, it’s usually just an informed guess for the doctor as to whether strep was the original culprit.
In addition to the elevated Anti-DNase B titers, we were also advised that The Dude has a genetic mutation. The mutation is referred to as being ‘heterozygous for the MTHFR C677T mutation’ or the ‘detection of one copy of the methylenetetrahydrofolate reductase mutation.’ Again, in lay terms, here’s what I know: MTHFR is a critical enzyme in the body. It’s required to repair DNA, switch genes off and on and other important functions. It’s also critical to the conversion of folate and folic acid (forms of Vitamin B9) to L-methylfolate (5-MTHF) that can be used by the body. While the mutation may or may not be directly related to PANDAS (coincidentally or not, a lot of the parents I talk to with PANDAS kids seem to have this mutation or one like it), it’s definitely good to know.
Since he is only heterozygous for the mutation (i.e., he doesn’t have two copies of the mutation), it’s milder for The Dude but basically, his body will have some trouble breaking down Homocysteine. It’s an amino acid that can damage the lining of your arteries and other cells. It’s naturally formed in the body but usually gets broken down by 5-MTHF. The mutation makes it more difficult for that to happen. Elevated homocysteine levels in the blood is a risk factor for heart disease, stroke and other forms of cardiovascular disease. It’s also been linked with other health problems and can lead to folate deficiency if not treated and supported with a diet rich in folate.
With all of that information gleaned from the blood draw, our doctor advised us to continue with the recommended supplements, remove corn syrup from his diet as well and begin something called Osteopathic Manipulative Treatment (OMT.) We continued down this path while continuing to give The Dude Zithromax to hold his original symptoms at bay.
In the months following our first meetings with the doctor, we saw ebbs and flows in The Dude’s symptoms. We would complete a course of Ceflex or Azithromycin and see several weeks of very few symptoms. Then, suddenly, he would wet the bed one night or not be able to put on his socks (they suddenly didn’t ‘feel right’) and we would know that the tics were about to begin again. In September 2012, he rubbed a patch on his nose raw with his tics. Back to the doctor and back on the antibiotics we would go. We were making progress but none of it was permanent.
There were good times: The Dude turned 5, the Ninjago birthday party at Gym Extreme, a trip to Notre Dame and lots of quality family time. There were also really bad times: the Halloween melt-down that I reported back in my Halloween is Melancholy for Mama Panda post and the day The Dude accidentally wet his pants in front of his friends. But we made the best of it.
Facebook, October 2012: ‘The Dude, who is in charge of handing out candy bc he still can’t bear to wear a costume, is making paper signs for the porch that say, ‘This is Spencer.’ I have no idea what they are for but I think they are sweet.’
As for the OMT, I’ll be frank: I may or may not have been the one that began to refer to it as ‘that woo woo shit’ as some point in early 2013. OMT is hands-on care. It involves a DO using her hands to diagnose, treat and prevent illnesses or injury. The doctor moves the patient’s muscles and joints using techniques including stretching, gentle pressure and resistance. Basically, it involved taking The Dude into the doctor’s office 1-2 times per week where he would lie on a table and the doctor would move his limbs around and identify areas where he was ‘stuck.’ It’s not like chiropractic care where she would ‘crack’ or ‘pop’ joints and not like massage where she might rub muscles…so I honestly don’t know what she was doing. It kind of just looked like some kind of ‘laying on of hands.’ All I know is that the boy enjoyed it and always left the office relaxed. I have no idea if it helped with his symptoms at all.
By January, 2013, we had gone to Florida to see ND in the Orange Bowl and were planning a family cruise in March. I started a new job in February and, all in all, The Dude seemed to be doing ok. We weren’t out of the woods (as you’ll realize when I actually write about the cruise) but life was generally better! We hit some bumpy patches occasionally and continued to learn more about PANDAS and non-traditional medicine.
Facebook, January 2013: ‘Spence has 100.5 this morning. Doc recommending sambucus and ossillococcinum. Good thing she’s an awesome doc…I feel like I just got an Rx from Hogwart’s!’
Before I write more about how things developed in 2013 and how we came to be cared for by a doctor in New York City, I’ll leave you with this video of the boots by the door to my garage. This is The Dude, in the bathroom, singing his heart out. He would never have let me film it…but I caught it and took heart in the fact that, despite any obstacles he might have been facing, he was still a pretty happy kid!
This is the last installment of The Birth Story but it’s a long one. Thank you for sticking with me!
So, Kylene didn’t feel any cervix and I wasn’t totally clear about what that meant (not to mention the fact that I was in hard labor and was probably not sure what anything meant!) Hubs apparently didn’t get it either as he began wandering around the house getting my hospital bag and trying to find the iPod with my HypnoBirthing CD on it and the music that I want to listen to in the hospital. Kylene finally got his attention by telling him, ‘She’s 10 cm…this baby is coming!’ Ultimately, we left the house with half of what we needed including my test strips but no insulin monitor and my syringes but no insulin.
Side note: The doctor never made it to the delivery when I was born and my brother was born in the front seat of my parents’ car in 1976 in the parking lot of the Red Carpet Motel on Colerain Avenue in Cincinnati. We had asked our doctors a few times whether or not fast labor was hereditary…we were assured that it wasn’t. I think additional studies on that topic might be warranted. <Smile.>
At some point, both Hubs and Kylene realized that there was no way that I was getting back into my clothes. We really didn’t have time to try to figure that out, so they draped my bathrobe across my shoulders and I made my way out of the house basically naked and wearing a cape. Luckily, it was 2 am.
Another side note: It was just our luck that Perry Township (where we live) had decided to redo all of the curbs in the neighborhood about 3 weeks before this night. That meant that we had to park our cars on the street and that there was a gulley between the end of our driveway and actual access to a car. Luckily, we had thought about that a bit and Chet Chaney of Perry Township had ensured that we had a plank at the end of our driveway that was wide enough for me to walk across if I went into labor. Let me tell you, however…’walking the plank’ naked and while in hard labor was not ideal.
I begged Kylene to ride with us but she knew that, after the birth, she was going to need her car so she reassured me that she would be right behind us and we began our caravan to Grady Memorial. My husband likes to race cars and motorcycles but I have NEVER seen him (or anyone) drive as fast as he did that night. It’s about 15 miles from Worthington to Delaware straight up 315 and I’m pretty sure Hubs was doing 80 in a 45.
I was in the front seat unable to speak and just kept watching the trees fly by through the sunroof on the car. I desperately wanted to tell Hubs to slow down but resigned myself to the fact that he was going to have to be in charge of the driving, as I had enough on my plate at that moment.
I don’t know how soon we arrived at Grady but I know we made it in record time. Hubs dropped me off at the door and went to park the car. Kylene accompanied me inside where we were met by a security guard who asked ‘How can I help you ladies?’ Ummm…I’m clearly 9 months pregnant and mostly naked…I’m here to see the podiatrist?
The nurses took one look at me, heard Kylene’s report that I was 10 cm dilated and hurried me into a wheelchair and up the elevators. I don’t think we signed a single piece of paper or provided any identification or insurance information until long after The Dude was born. I think that’s when I really started to realize that this baby was coming soon!
They got us into a birthing room and the nurse offered me a hospital gown. I immediately stated that our birth plan indicated that I intended to birth in my own clothing. We had learned a great deal over my pregnancy and felt strongly that birthing in a hospital gown made you a ‘patient’ while birthing in your own clothing was empowering and helped remind the staff that you weren’t ‘sick’ and didn’t want unnecessary interventions. The funny part was, however, I didn’t have any clothes on to birth in and there was no chance that I was putting any on. Up to that point, I had been a fairly modest person, but my entire childbirth experience was conducted completely naked and I couldn’t have cared less! To this day I wonder what the nurses and doctors thought about that!
Once our nurse realized that we were ‘those people’ with the crunchy birth plan, she left the room to go get it. After reviewing it briefly, she articulated to us what she thought we wanted:
To be left alone with our doula as much as possible while I was laboring
No induction…although that likely wasn’t an issue at that point in my labor.
No C-section unless absolutely medically necessary.
No IV. I was willing to allow them to put in a port in case I needed immediate medical attention but felt strongly that being attached to a IV would limit my ability to move to positions where it was easiest for me to birth.
Monitors for the baby only at occasional intervals.
No cervical checks
Not to have my water broken artificially. We knew that there were risks that, upon breaking my water, the cord could wash down ahead of the baby and create the potential for it to wrap about the baby’s neck. We also knew that there was no issue with the baby being born ‘in the caul’ and that we wanted the birth to take its own course without being rushed.
No cord cutting until all of the cord blood had drained into the baby
For Hubs to announce the sex of the baby
The vernix to be left on the baby. No immediate washing.
The baby to be kept in the room with us and immediately placed on my chest after birth to promote bonding and nursing.
No Vitamin K injection for the baby unless birth trauma or blood clotting problems were apparent
No eye drops immediately after birth – these drops are administered to prevent syphilis from causing blindness in the baby. Since I had tested negative for all STDs, it seemed ridiculous to us to administer drops that could cause the baby to have trouble seeing and potentially impair immediate bonding.
No circumcision if we had a boy. I could (and might) write a whole post on this topic. I know it’s controversial and brings out almost as much drama as the vaccine conversation but let it suffice to say for now that my stepsons were not circumcised and I couldn’t bear the idea of causing a baby pain so soon after his entry into the world. Hubs was on board and used to the idea because he wasn’t consulted at all on the decision in his first marriage.
No bottle feeding.
After confirming our birth plan wishes (primarily with Kylene and Hubs as I was mostly non communicative), our nurse immediately set about respecting our wishes. She turned the lights low in the birthing room, didn’t force me to put on any clothes or have an IV or heart monitor, assured us that she was available should we need her and that she would be back occasionally to check in.
To this point, my water had not broken but I was laboring pretty hard. Kylene was convinced that The Dude was going to be born without it breaking and I couldn’t really wrap my mind around much of anything at that point. Kylene was performing perineal massage for me in the hopes that we could avoid an episiotomy (the idea being that something that has been cut is more likely to rip than something that has not) and Hubs was helping me try to relax and listen to my hypnosis scripts.
We had yet to see Dr. Hammett and were informed, shortly after we arrived, that he would not be able to attend the birth. We were really disappointed but so far along at that point that I’m not sure it really mattered. I wasn’t sure who would be coming into see us but was later informed that his partner, Dr. Louvakis, would attend. As I learned later, Dr. Hammett was a widower with two children. It just so happened that, the night that The Dude was born, he was not on call and couldn’t find anyone to stay with his kids in order to be with me. While I certainly would have preferred that he deliver The Dude, we completely understood his situation and knew that he would make sure we were in good hands.
I was pretty shocked that the doctor hadn’t come in to see us. I had no idea (as I was a first-time mom) that the nurses pretty much attended the entire labor process and the doctor didn’t arrive until she was needed. Kylene kept and eye on me and our nurse came in and out quietly on occasion and I continued to labor. I mostly labored perched on the edge of the hospital bed in a sitting position and I think that having the ability to bear down in that way helped a great deal in progressing my labor.
At some point, I noticed that my body was tensing up intensely with a downward surging feeling. I can only describe the feeling by saying that it was much like the feeling you have when you stomach contracts before you vomit…except when vomiting, the result is a strong upward push. This stomach contraction was always followed by a strong downward push.
Kylene would occasionally say, ‘Can you give me another one of those?’ I honestly had no idea what she was talking about! As it turns out, I was one of the lucky ones who experienced ‘spontaneous pushing.’ My body had taken over and decided to move the baby down the birth canal. Kylene thought I was ‘doing work’ to bring the baby closer to crowning but I was at the mercy of my body. Apparently, I made a lot of progress pretty quickly.
Shortly thereafter, Dr. Louvakis did come in to check on me. She put the heart monitor on and took a look at my progress. She was intrigued that my water had not broken and advised us that, since the baby’s head was already engaged, there would be no risk to breaking the waters at that point. Hubs, Kylene and I conferred and agreed to let her do that.
She broke my water and then left, telling us that she would return in time to attend the delivery. Hubs and Kylene stayed with me and, not long after Dr. Louvakis left, Kylene announced that I was crowning. I had a mirror at the foot of the hospital bed and could see The Dude’s hair become visible. Before paging the nurse, Kylene asked if I wanted to touch his head. I’m not sure why but I immediately said no. I was a little freaked out at that point and afraid to hurt him. But I could see him coming and it was absolutely amazing!
Kylene paged the nurse who came in to confirm that I was crowning. She immediately called Dr. Louvakis who arrived quickly. I don’t remember how many times I pushed but, as I wrote above, my body did that work without me having to think about it. Several pushes later, The Dude was born at 5:02 am.
Unfortunately, just before The Dude’s head was fully birthed, Dr. Louvakis pulled. We had hoped that all of the perineal massage that we had done would prevent tearing and avoid the episiotomy but her last-minute pull caused considerable damage.
We had chosen not to learn the sex of our baby during my pregnancy so it was Eric’s job to investigate and announce that we had a BOY! I remember saying ‘It’s a Spencer!’ as we had chosen Spencer Reid as a boy’s name and Sidney Elise for a girl. The Dude was placed on my chest (that’s the photo from the last post) and immediately pooped on my stomach. It was that black, tarry, sticky meconium poop but I couldn’t have cared less. I guess he wanted me to know right away that my life had changed forever! The woman of two days before would have been disgusted!
While we had clearly articulated that we didn’t want the cord cut right away (we wanted all of that healthy cord blood to go into the baby,) Dr. Louvakis asked Hubs if he wanted to cut it (he didn’t…he’s very, very squeamish) and then began to cut it herself. Hubs immediately spoke up saying ‘Whoa, whoa, whoa!’ Louvakis (who had signed off on our birth plan but wasn’t particularly bought in) just rolled her eyes as if to say, ‘Oh…it’s you guys!’ But she waited to cut the cord.
The Hubs took him to the scale where the nurses weighed him in at 7 lbs 9 oz and gave him an Apgar score of 9. He brought him back to me without him being washed and The Dude immediately latched on to nurse. We had had a number of concerns about nursing prior to the birth: gestational diabetes can interfere with nursing and we were prepared to feed him with a special apparatus or dropper if necessary to avoid having to go to formula right away. None of that was necessary, however, as he took the breast like a champ within minutes.
I was overjoyed! My birthing experience had been amazing and basically exactly what we had hoped for. The staff was respectful of our wishes, Kylene was amazing and Hubs was able to be present and supportive in the way that he wanted to be. I didn’t suffer much and my labor was 6 hours start to finish. As I’ve said before, I would have done it again in a heartbeat!
As soon as The Dude started nursing, Kylene offered to get me some juice and crackers. I hadn’t eaten anything during labor and she thought I might benefit from some sustenance. Strangely, Dr. Louvakis put up a hand and said ‘No food or drink!’ We were really confused…why couldn’t I eat and drink now that the baby had been born? My baby was here, all was well and I was ecstatic. What was going on? Unfortunately, she advised us that it had been 45 minutes since The Dude came into the world and I still hadn’t birthed the placenta. We were advised that she had two things she could try and that, if they didn’t work, she would have to take me in for surgery to remove it.
Birthing the placenta was the worst part of the whole experience. The ‘two things’ that Dr. Louvakis mentioned were awful. First, she pressed intently on my stomach in an attempt to get the placenta to come out. Finally, she prepared me for discomfort and reached up into my uterus and scraped it out with her hand. I just remember shouting at some point, ‘Dr. Louvakis, THAT’S ENOUGH!’ Needless to say, it was painful. Luckily, it was over quickly and no surgery was required.
The only other ‘less than stellar’ moment occurred when Dr. Louvakis was repairing the tear that had occurred when she pulled on The Dude’s head. I was nursing, the birth was over (to my mind) and I was ready to be left alone. Nevertheless, the tears had to be repaired and, apparently, they were relatively extensive. Eventually, I remember asking Dr. Louvakis, ‘Are you almost finished?’ to which she replied, ‘Well, there’s one more problem. The final tear has subdivided your inner labia and I’m going to have to sew it back together. It’s completely cosmetic but it will take me some time to fix it.’ Hilariously, I was so ready to be done with childbirth and alone with my family that I asked Kylene and Hubs to go take a look and let me know if it was worth the additional trouble. Based on their recommendations, I decided to forego having it fixed and now have a ‘very special’ battle scar from birth.
We had promised that my stepsons could be the first to meet the new baby when he arrived so we called their mom’s house (as it was still very early and they had not yet gone to school) and arranged for Hubs to pick them up and bring them to the hospital. My parents, however, had been called at some point and driven from Cincinnati (getting pulled over on the way for speeding but talking their way out of the ticket) and were in the lobby. I knew that they were chomping at the bit to meet their new grandson so we let them sneak in before we went to get the boys. I’m pretty sure that, to this day, the boys don’t know that they weren’t the first to meet their brother but I’m not sure they would care!
I wouldn’t change a thing about how The Dude came into the world. We did nearly everything we had planned, had amazing support from the hospital staff, were attended by a fabulous doula and welcomed a perfect baby boy into the world! I remember telling a friend, shortly after returning home, that the birthing experience was, for me, like having just the briefest glimpse of God through the clouds before they converged again. I knew, with the birth of my son, how blessed I was!
So I included the picture above for those of you who don’t REALLY want to read the details of a birth story. I thought the fact that The Dude is still covered in vernix and my ‘bits and pieces’ are nearly showing would be a good indicator of exactly how much detail we’re about to discuss. If you’re up for it…read on!
We saw Dr. Hammett weekly for a few more weeks. All was going well…The Dude (we didn’t know if he was a ‘dude’ or not at that point) was growing, my blood sugar was stable, etc. I was still working 40+ hours a week at the bank and by the time I hit 31 weeks, I was literally in tears every day walking out to my car. Given, I was HUGE at that point and everything on me was swollen. See photo below for proof:
Nonetheless, Chase is the 2nd largest flat-topped building in the US and the parking lot reminds me of the airport. After working all day and finally getting ready to the leave the building, half the time I couldn’t find my car and the other 1/2, I just didn’t feel like I could walk to it. I was worn out to the point of tears every single day.
Hubs finally insisted that I mention it to Dr. Hammett at my next appointment so, on September 17th, 2007, I waddled into Dr. Hammett’s office and told him I felt like I was losing it! He talked to me for awhile and then suggested that perhaps I was trying to do too much. He mentioned that sometimes, stressful careers and pregnancies don’t go together all that well and that perhaps I would benefit from a reduced work schedule. He offered to write me a note for work to make that happen. Just as we were about to finish out conversation, he looked at my chart and said, ‘We haven’t done a cervical check on you yet and it’s just about time for those to begin, would you like me to go ahead and do that today?’ I agreed and learned exactly why people complain about cervical checks and pray for doctor’s with small hands!
Here’s where things got interesting. Dr. Hammett, while doing the cervical exam, says, ‘Remind me…how many weeks along are you?’ I responded, ’31.’ He immediately said, ‘You’re not going back to work at all. You are three centimeters dilated. It’s no wonder you feel terrible…you’ve been laboring!’ And with that, I was put on bed rest.
Now, those of you who know me know that I’m pretty Type A…and especially when it comes to my work. I had planned to be at work for another 9 weeks and was not AT ALL ready to hand off my responsibilities to someone else and be ‘out of the office’ for bed rest plus 12 weeks of maternity leave. I called my husband in a frenzy, called my boss in a frenzy and spent the entire evening freaking out on the laptop trying to get everything under control so that I could ‘go on bed rest.’ I know, it was crazy but I was caught off guard and completely unprepared. I was also a 33 year old career woman who thought her job was the most important thing in the world. Bed rest started the process of showing me the truth about that but the arrival of The Dude definitely finished it.
Bed rest, for me, consisted of staying flat on my back, whenever possible, until the baby came. I was allowed to get up to get something to eat, go to the bathroom and take a shower once a day. Hubs was working…so I spent most of that time alone although a number of friends did pop by and check on me.
For the first few days, whenever Hubs came home, I was sobbing. Unfortunately for him, bed rest did not mean that I couldn’t use the computer. I spent 1/2 of the 8 hours a day he was gone surfing the internet for information about ‘premature babies’ and ‘babies born at 32 weeks.’ Of course, stories with happy endings don’t often make the internet so I was reading nothing but sad stories that were horrifying to a 32 week pregnant, hormonal woman on bed rest. I think Hubs was about to institute an internet ban!
Luckily, as each week passed, I calmed down knowing that The Dude was another week more developed. I napped a lot…a friend came over and taught me how to knit…I read and watched a lot of Jon and Kate Plus 8. (That one, I can’t really explain.) I was concerned that I wouldn’t be allowed to attend my own baby shower but was given permission, as long as a stayed sitting for the entire thing, to go.
We had a couple of instances where we thought I might be in labor and traveled up to Grady but were always sent home. Until finally, on the evening of October 25th, some friends (including Kylene, our doula) came over for a gathering. I was still lying around but they came over to keep me company. We were getting close to 28 weeks and I had been given permission to get up and move around more since The Dude was pretty much full-term. As I walked Kylene out to her car (she was the last to leave) we noticed the full moon. I distinctly remember lifting up my shift and showing my belly and saying, ‘Ok full moon…I’m ready for this baby to come!’
I went back in the house. It was about 9:30 pm on a Thursday night and we had missed Survivor because we had a house full of people. We had Tivo’ed it and Hubs and I sat down to watch. I sitting on the couch with the coffee table in front of me and just before the show ended, I started to feel a little crampy. I leaned forward to stretch out my back and felt a hard punch to my pelvic floor. Now remember, I had had terrible UTIs all through my second trimester and, after an abdominal ultrasound, had been told that The Dude’s head was compressing my bladder. In our last weekly appointment before the 25th of October, we had seen Dr. Lin and she had indicated that his head was now resting on my pubic bone. I didn’t know it then but I’m pretty sure now that that ‘punching’ feeling was his head slipping off my pubic bone and engaging in the birth canal.
Within 30 minutes, I was feeling super hot and sweaty and had started to feel some regular surges in my abdomen. Hubs started timing them (they were about 10 minutes apart) and we began working through one of our HypnoBirthing scripts. I felt like I couldn’t concentrate AT ALL and found the attempt at hypnosis annoying. I also could not cool down. I remember going into the downstairs bathroom and stripping out of all of my clothes. I was just incredibly HOT!
Somehow (I don’t remember how) we ended up upstairs in our bedroom. Hubs continued to time contractions and put my HypnoBirthing CD on for me to listen to. I remember leaning against our bed (it’s pretty high off the ground) with my belly resting on the mattress. I would swear that I was there for a few minutes but Hubs swears that he watched me stand there, on tip toes, for over an hour and half. We had called Kylene from downstairs and told her about the contractions and she advised that we call her again when they were closer to 4-5 minutes apart. Hubs was under the impression that the contractions had stopped because I had stopped mentioning them while I was leaning on the bed. Kylene called back around 12:30 am though and, when I heard Eric tell her that the contractions were no closer together, I yelled out, ‘No…I just stopped telling you about them!’ Oops!
I also suggested that Hubs ask Kylene to come over and that we should call Dr. Hammett. Hubs called Hammett and he said that we should give him another call when we were ready to head to the hospital. Shortly after that, Kylene arrived. I still didn’t have any clothes on (you’ll notice that’s a theme in this story) and had moved onto my hands and knees on my bed. I was continuing to get more and more uncomfortable and, every 3rd or 4th contraction, would tell Hubs and Kylene that it was time to take me to the hospital. We had agreed, however, to wait as long as possible to go to the hospital (to avoid interventions as much as possible and allow me to labor in the comfort of my home) so they supported and reassured me and waited to see if I would ask again.
At some point in the next hour, I began to insist during every contraction that I needed to go to the hospital. I had reached a place where I couldn’t deal with the discomfort effectively and I had only been laboring for about 3 hours. I had heard that first labors can last 24-36 hours and I was in a panic: there was just no way that I could maintain that level of discomfort for another 21-33 hours! Kylene and Hubs agreed that it was time to go. Just before we began to pack to leave, Kylene asked, ‘Would you like me to do one cervical check before we go?’ We hadn’t done any because I knew that I was competitive…if I had been 3 centimeters dilated at 3 hours, I would expect to be 6 centimeters at 6 hours. We had ‘no cervical progress checks’ written into our birth plan for just that reason.
I agreed to a cervical check from Kylene…I was curious about how far along I was. As my doula, she was incredibly kind and supportive and had continued to reassure me by saying things like ‘You are doing this!’ and ‘Everything is going great!’ She had gently helped me find positions in which I might be more comfortable and had rubbed my back to help relieve some of the pressure. In general, she had been all ‘peace and light’ throughout my labor. So, it was with a fair bit of anxiety that I heard her turn to Hubs and say, ‘We need to go to the hospital now! I don’t feel ANY cervix!’
We’ll head to the hospital and FINALLY deliver this baby in Part 4!
All these photos are from the year before The Dude was diagnosed with PANDAS. He literally had 7-8 costumes and wore them every day throughout the month of October. He loved Halloween and it made me so happy because I love it too!
Halloween is melancholy for me now for a couple of reasons:
My first real meltdown about PANDAS happened at his daycare Halloween party in 2012. He had loved Halloween SO much and was SO excited to wear his costume but, when we got the party, he just couldn’t put it on. We stood in the corner for over 30 minutes while he cried and tried to put it on, changed his mind, got upset because he wanted to put it on and cried some more. It was totally traumatic for both of us. It also happened to be his birthday and I remember leaving the party and sitting in the car outside of the daycare just weeping because I was so disappointed for him and frustrated with this stupid condition! He didn’t know why I was crying and, once we got out of there, he was happy but I had had such high hopes for that day and was just devastate that it didn’t go as planned. He loved Halloween and costumes so much and PANDAS had ruined that for him. It still happens today sometimes: I forget that his health may not cooperate with my expectations. It’s so hard when you want something to go so perfectly and PANDAS gets in the way. I have to remember that we just have to do the best we can do and play it by ear.
Halloween can be tough because, with The Dude’s dietary restrictions, Trick or Treating is kind of a let down. He gathers tons of candy but can’t eat any of it. While today we do a ‘trade out’ program (he gathers as much candy as he can we pay him buy the pound for it,) at 4, 5 and 6, he was too young for that to be meaningful. One sweet memory I have about those Halloweens is this:
I was determined that The Dude would have a ‘normal’ Halloween and be able to enjoy Trick or Treating. So, I created a note for all of the neighbors in our circle (about 30 houses) that said, ‘My son has a medical condition and cannot eat regular candy. We’d love for him to still have a great Halloween so I’ve put together this baggy of ‘special’ candy and goodies for you to give him when he comes to your house. He will be dressed as Anakin Skywalker and his name is Spencer. Thank you so much for making this a special night for my little guy!’ Then, I snuck around in the dark after he went to bed on Halloween Eve putting the notes and baggies in all the neighbors mailboxes. They came out in full force! Every house we went to participated and most said, ‘Hey! Are you Spencer? I have something special for you!’ He thought he had won the lottery and I was so touched by everyone’s participation. At 7, he finally told me I didn’t have to plan the candy anymore and that he would be happy to just have money for his loot…but I still smile when I think about how kind our neighbors were and how happy it made The Dude!
This year, it’s taken the purchase of 3 costumes to find one that he will actually wear. That’s pretty typical these days. Not only does PANDAS make him sensitive to particular clothing (and costumes are not usually the most well-made, comfortable garments,) his OCD also makes him very sensitive to the idea that people will notice him. It hasn’t occurred to him yet that, if all 520 kids in his school are wearing costumes, no one is going to notice him in particular! His buddies are coming over tomorrow night to raid the neighborhood…I still enjoy seeing him get excited about going door-to-door with his friends!
So, we leave Professionals for Women’s Health. I’m sobbing. Hubs is trying to calm me down. I’m convinced that no other doctor is going to be willing to see us and that I’m going to have to come back to these awful people.
By the time we get home, I’m in ‘go mode.’ (That’s what my husband calls it when I get serious and put my game face on.) I’m going to find a way to deliver this baby naturally without those people! Having read Adventures in Natural Childbirth and attended 1/2 of the HypnoBirthing classes, I’m aware that it’s possible to have a baby at home or in a birthing center, attended by a lay midwife. While I never thought I would be ‘that person,’ I suggest it to my husband. He’s nervous about the idea but agrees to go with me to check it out.
I research ‘birthing centers’ in Columbus, Ohio and find out that (at that time, though I don’t know for sure about now) there were none. The closest one appeared to be in Dayton and that wasn’t going to be an option for a woman in labor! Kylene (our doula), however, recommends CHOICE Midwives and suggests that we consider a home birth. Hubs and I are both a little freaked out about the idea, but decide to pursue it.
We visit CHOICE’s offices and interview a couple of midwives. They are hesitant about the gestational diabetes but willing to take us on as clients. They mention, however, that it’s ‘always a good idea’ to have a ‘back-up doctor’ in case something goes wrong at home (they would not be permitted to help us deliver if we were transported to the hospital) and that insurance will not likely cover any part of a birth that takes place at home.
We are very comfortable with the expertise and bedside manners of the midwives and decide to investigate the insurance angle and see if we can find a doctor who would be willing to meet us at the hospital if something were to go wrong during our home birth.
I spend HOURS on the phone with our insurance company. The run-around is unbelievable. Half of the people I talk to don’t know what I mean by home birth and the other half can’t find anything in our health insurance policy that addresses it. I get every answer from ‘if you birth with a midwife in a birthing center, we’ll cover it’ to ‘we don’t cover midwives but we do cover home births.’ (Yeah, you tell me how that one works!) Ultimately, however, the answer is ‘no.’ Insurance will not cover any part of our birth (and potentially will not cover post-natal care) if we decide to birth at home. We’re undeterred (and striking out when it comes to finding a ‘regular’ OB who will take us) and decide that we’re going to do it!
Interestingly, we mention our decision at the next HypnoBirthing class and everybody has advice for us. Most of them know ‘regular’ doctors who are very supportive of natural childbirth and home births. We get a list of names of doctors who might take us on or be willing to support us if our home birth should go awry. One name on the list comes up over and over again: Dr. William Hammett. He practices in Delaware, Ohio…about 20 minutes north of where we live and in the same town my step kids live in with their mother. His hospital privileges are at Grady Memorial Hospital…a very small hospital in Delaware that I know little about but coincidentally is where both of my stepsons were born. Not going to the ‘big’ hospitals in town is a little nerve wracking for me but we are willing to reach out to him.
We call Dr. Hammett’s office and speak to his office manager. I explain our entire situation and she is amazingly helpful and feels very sure that Dr. Hammett would be willing to see us. She calls me back that afternoon after speaking to him and arranges an appointment for the next day!
Hubs and I drive to Delaware to meet with Dr. Hammett. He’s late to our appointment (we would find out later that that is VERY typical for him because he spends as much time with each patient as she needs) but was warm and willing to listen to our concerns. He doesn’t balk at all at the idea that I could manage my own blood sugar and immediately arranges for an appointment for me with the Grady diabetes education department. We agree that, if I am unable to manage my blood sugar with diet, we will talk about insulin. While he understands other OBs’ concern that gestational diabetes ‘is where 14 pound babies come from,’ he isn’t at all ready to relegate me to a C-section just because the baby processing my sugars might result in a large baby that might be hard to birth.
We talk through our birth plan with him and explain that we are in the process of arranging a home birth with CHOICE midwives and curious as to whether or not he might be our ‘on-call’ doctor in case of emergency. He describes the intimate birthing setting at Grady (only 8 birthing rooms, a steak and sparkling grape juice dinner the night of the baby’s birth and a handmade quilt made by the local senior center for each baby) and assures us that, should we need to be admitted, the nursing staff is very familiar with the types of natural childbirth proponents he often supports. He readily agrees to be our ‘on-call’ doc and commends us for deciding that, without the support of our original doctors, we would pursue a home birth. He is very rationale about our choices and clearly explains to us that there are risks in hospital birth as well as home birth.
Hospitals are full of germs. Birth interventions that can impact mother-baby bonding are much more likely in a hospital setting. The rate of inducement and C-section in hospitals is, of course, much higher. He does, however, want us to understand the risk of home birth.
To his mind, a home birth is a completely safe alternative to hospital birth when attended by a qualified midwife. He has no concerns about the baby getting stuck, me hemorrhaging, or the baby’s heart rate dropping. In any of those circumstances, in his opinion, a wise midwife could assist or make the decision to transport to a hospital in plenty of time. He one caution is this: if the baby is born not breathing in a home birth setting, time is of the essence and the midwife’s ability to resolve the situation or get mother and baby to hospital in time might be limited. He feels strongly that a baby who can’t breathe and is born at home has a much lower chance of survival.
Nevertheless, he asks us to trust our intuition, consider the pros and cons of each option and recognize that risks existed in both situations. He is willing to support all of the birth and post-natal preferences we had documented (more on those later) and he promises to support us regardless of our decision and to provide any prenatal care I might need outside of the midwives’ support before our baby comes.
We leave feeling such relief. About 2 miles down the road, Hubs turns to me and asks, ‘So are you still feeling good about the home birth?’ I immediately respond, ‘Oh yeah. I think it’ll be great.’ We are quiet for much of the rest of the ride home until I say, ‘You know I really loved Dr. Hammett. He almost made me want to just have our baby at Grady with him.’ Hubs immediately responds, ‘I’m so glad you said that…that’s what I want to do too!’ We laugh and our decision is made. Neither of us had wanted to disappoint the other but it was clear: We’ll continue to see Dr. Hammett for the remainder of my pregnancy and he will deliver our baby at Grady.
Because I am already 29 weeks pregnant, we see Dr. Hammett pretty much every week after that. Initially, I meet with the diabetes counselor and learn about how to manage my diet. I have already gained nearly 45 pounds (I would gain 60 before I gave birth…eek!) and am HUNGRY! While the beginning of my pregnancy was marked by cravings for bananas and orange juice, by 29 weeks I can eat 2 Whoppers at a sitting. Healthy eating is not coming easily to me and my blood sugar is not under control,
By the time we go back to see Dr. Hammett about the blood sugar, it’s clear that I’m not going to be able to manage it with diet. He sends me back to Diabetes Education and they teach me how to acquire, draw and inject my own insulin and when and how to do so in conjunction with my meals. My blood sugars immediately come back within tolerance and I have no qualms about using the insulin. Luckily, unlike my mother and Hubs, I’m not afraid of needles or blood! Interestingly, neither is my youngest stepson: he gets the biggest kick out of being allowed to inject insulin into my leg. We joke that he is definitely going to grow up to be a doctor. He’s 4 and 1/2 and just loves to help!
We continue to see Dr. Hammett and he signs off on our birth plan. We also take the birth plan to the hospital birthing wing and share it with the nursing staff. They indicate that they are comfortable with it and will keep it on file. Dr. Hammett suggests that we share and get sign off on the birth plan from his two partners, Dr. Lin and Dr. Louvakis just in case something happens and he is unable to attend our birth. He shares his home and cell phone numbers with us personally though and we know we’ll be able to reach him when the time comes.
I truly don’t know what differentiates one OB from another but the experiences we had with Dr. Hammett, his office and partners were so vastly different from what we experienced elsewhere that to this day, I’m floored. Is it training? Culture of the practice? Individual personalities? We were admired and commended in Dr. Hammett’s office for educating ourselves about birth and making informed decisions about what we wanted for ourselves and our child. We were shamed and scoffed at by Professionals for Women’s Health for doing the same. I know that my birthing experience was 100% better for the confidence and support I received from Dr. Hammett, his staff and the staff at Grady!
The exciting part is coming up…check back tomorrow to read about my labor at 32 weeks and The Dude’s ultimate delivery!
Yes…all my best stories are long stories. As you know, today is The Dude’s birthday and it has me looking back on one of the most amazing experiences of my life. I hope parents and future parents (whether you are from the PANDAS community or not) will take something from The Dude’s birth story.
I’m one of those strange birds who loved childbirth. Pregnancy was, unfortunately, a miserable experience for me but, if being pregnant wasn’t a necessary precursor, I would do childbirth again and again! I suffered nausea in the first trimester and serious UTIs and kidney infections in the second (Thanks Dude! Your head on my bladder was just what I needed!) By the third trimester (32 weeks) I was laboring and didn’t know it. I ended up on bedrest for the last 6 weeks of my pregnancy. I like to think that an incredible birthing experience was my reward for surviving all of that!
But, back to the beginning: When I first found out I was pregnant, I was firmly in the ‘hook me up to the epidural before I get to the hospital’ camp. Sometime, however, around the end of my first trimester, I encountered three things that changed my perspective:
A friend mentioned to me that she had had an epidural with her first child and felt like ‘the doctors had just pulled a baby out from under the table and she had had nothing to do with it.’
I read an article that explained that the body of a pregnant woman in a coma will deliver her baby without intervention. I know, a strange fact for me to hone in on, but a very interesting one to me.
I landed on a book called Adventures in Natural Childbirth by Janet Schwegel. I’m not sure how I came across the book but it’s a collection of personal stories that illustrate different women’s experiences with natural childbirth. It runs the gamut from women who chose to have natural childbirth in a regular hospital to those who birthed their babies alone in a bathtub. It definitely also has a ‘natural childbirth is best for your baby’ bent that I couldn’t escape.
While I certainly wasn’t convinced that I was ready for the ‘solo bathtub’ birth, these three experiences got me thinking. My husband and I knew we were only going to have one child together. He had two boys from a previous marriage and we had agreed, while dating, that we wanted to be parents together but that my husband wasn’t ready for more than 3 kids. So, during my pregnancy, I knew pretty clearly that this was my only opportunity to do childbirth the way I wanted to.
A few thoughts drove me to change my attitude:
I wanted to be present and involved in my child’s birth. If my friend regretted that she felt that her baby had been ‘pulled out from under the table,’ I wanted to take that into consideration.
If my body could deliver this baby on it’s own, surely I could do it while conscious. I was afraid of the pain and that I wouldn’t be able to successfully birth the baby but that (somewhat ridiculous but reassuring) piece of information gave me some level of confidence.
Adventures in Natural Childbirth showed me that there were lots of ways to have a natural childbirth. I didn’t have to squat in a field and go back to planting crops for my birth to be ‘natural.’ And, if I was only going to have one baby, didn’t I owe it to him or her to try to do the best I could?
That being said, I had no idea where to start with learning more about natural childbirth. So, I did what anyone of my generation would do: I turned to the Internet. I researched ‘natural childbirth’ and read about Lamaze and The Bradley Method. Each had it’s own pros and cons but I wasn’t convinced that either one was for me. Finally, I landed on something called HypnoBirthing and found myself very intrigued.
For those who don’t know, HypnoBirthing is founded on the ideas that:
Fear causes tension.
Tension causes pain.
If you can train your body to release the fear, you can reduce your body’s tension and minimize or alleviate the pain associated with childbirth.
Hypnosis is a way to train your body to relax and release fear.
Something about those ideas rang true for me. Moreover, I had done some work in therapy in the past that used the mind-body connection to alleviate trauma and had been told that I was very intuitive and suggestible. Something told me that HypnoBirthing might just work for me.
While I was looking around Columbus to see if I could find a HypnoBirthing class, I was also exposed to the idea (I can’t remember how) of having a doula present at my child’s birth. At first I didn’t understand why anyone would want a stranger in the room with them while they were birthing…I only wanted my husband present. Even the idea of my mom or a good friend attending the birth was too much for me.
As I read more about what a doula is and does, however, I became enamored with the idea of having someone present to support me while I was birthing. Those who promote the idea of using a doula point to the fact that hospital staff are focussed on the health and well-being of your baby and that dads often don’t know what to do to help their wives through the birthing experience. I knew my husband would be there to love and support me but the idea of having a knowledgeable, caring professional available to meet my needs while I was birthing felt more comforting than I had expected.
Luckily, I had an acquaintance in an organization that I belonged to at the time who was training to be a doula. Her name was Kylene and she was the sweet, loving, mother of two adorable girls. Her manner was reassuring to me and I knew that she would be a tremendous doula regardless of the fact that she had not yet completed her training. Hubs and I interviewed her and talked about cost (sadly, though doulas can improve birth outcomes significantly, they are usually not covered by insurance) and immediately hired her. We inquired about whether or not she would be willing to attend birthing classes with us and, as she was still training and very interested in the HypnoBirthing method, she agreed.
The local hospital was offering a HypnoBirthing class but the timing was wrong and they didn’t seem to be using the Mongan method that I had read about. Luck was on my side though as I was able to find a private HypnoBirthing teacher in Bexley who was starting a class. Her name was Nikki and she already had already had 2 (or 3?) natural childbirth experiences. She wasn’t just a HypnoBirthing teacher, she had tried it! We signed up right away and began going to her home with 3-4 other couples every other week.
We learned a lot more than I had anticipated in that class. I went in thinking that I would learn how to hypnotize myself or allow my husband or doula to hypnotize me to ease the process of childbirth. While that certainly was part of what we learned, we were also exposed to a great deal more:
We learned about the power of the mind and how telling ourselves that we would ‘try’ to birth naturally was giving ourselves an out.
We learned not to pressure ourselves or beat ourselves up if natural childbirth wasn’t in the cards but that, in advance, we needed to assert that we were going to have this baby naturally. Apparently, the connection between the mind and the body is so strong that affirming something can greatly increase the odds of it happening.
We learned about interventions that happen in a hospital setting and how they could interfere with our desire to have a natural childbirth.
We learned ways to ensure that we were supported in having a natural childbirth by our doctors and the hospital staff.
We learned about birth plans, how to write them and what to include.
We learned how to leverage our doula to support us and what doulas were allowed and not allowed to do in a hospital setting.
We learned how to decline suggestions from the hospital staff that were not in line with what we wanted for our birth experience and/or our child. (Key words: ‘I hear you, I understand you, and I decline.’)
We practiced HypnoBirthing techniques and learned how best to help me relax. It was trial and error. Some exercises worked quite well…others, not so much. I distinctly remember insisting to my husband that I was releasing the weight of my arm entirely so that he could support it. Apparently, my Type A self had a different idea of releasing than the one we were going for.
We were given a book to read prior to each class and a CD that I listened to for hypnosis every night before bed. ‘I relax and let birth happen.’ ‘I love and trust my body and my baby.’ I think I fell asleep to those words every night for at least 4 months. Of course, I had no real idea whether or not HypnoBirthing was going to help with our birthing experience but we learned a lot about the human body and our developing baby too.
I think Hubs was initially a little hesitant to be super involved in the pregnancy. He had his own battle scars from the births of his first two sons and felt, I think, a little unsure what he was supposed to do. I remember clearly, however, that we saw a video during one of our HypnoBirthing classes that showed how early a developing baby can recognize the voices of its parents and those that are regularly around ‘the belly’ during pregnancy. That video had a tremendous effect on my husband and he started to connect more with the process and talk more to my burgeoning stomach. Never mind that he always seemed to say, “This is your Dad-dy” with an Indian accent. (We are not even remotely Indian) It was sweet and endearing and I think it allowed him to grow attached to our son even before he came into the world.
Unfortunately, about halfway through our HypnoBirthing training, things started to come off the rails a bit. I was diagnosed with gestational diabetes after my first glucose challenge test. To that point, we had been seeing the nurse midwives at Professionals for Women’s Health in Westerville, Ohio. (Yes, I’m calling them out here. I’m still pretty mad about the situation.) They were the ones who had told me I was pregnant, they were the ones who did our first ultrasound and arranged my prenatal care. They treated my UTIs and admitted me to the hospital for Cipro when the infection got worse than expected. When I was diagnosed with gestational diabetes, however, they ceased to listen to the concerns that my husband and I raised with them.
I was 33 at the time so I wasn’t of ‘Advanced Maternal Age’ but the gestational diabetes had them worried and they wanted to send me to see a Maternal Fetal Medicine doctor at Riverside and consider the possibility of scheduling a C-section. Now, we had learned about gestational diabetes in our birthing classes and had done some research on the topic on our own and proposed two things:
I was willing to try to control my blood sugars with diet.
If that didn’t work, I was willing to inject insulin for the rest of my pregnancy to control those sugars.
My goal was to have my baby naturally and we knew that once we were on board with a MFM doc and moving toward a C-section, that was going to be harder. The docs and midwives at Professionals for Women’s Health were having none of it. They barely listened to our thoughts and advised us rather quickly and strongly that, if I refused to see the MFM doctor and insisted on trying to control my sugars with diet or insulin, I would no longer be considered a patient in their practice.
After conferring briefly (during which conversation my husband reminded me that ‘if they aren’t going to listen to us now when there is no emergency, they likely aren’t going to hear us out during childbirth’) we not-so-politely informed them that we would go elsewhere for our prenatal care and delivery. Before leaving the room that day, the doctor in charge advised us that she would ‘go ahead and set up our next appointment because we would be back when no other doctor agreed to see us at 28 weeks pregnant.’ As you can imagine, we left hell-bent on the idea that we would never return.
Since you know this story has a happy ending, I’m going to leave it here and hope to finish it tomorrow! Thanks for reading.
Happy Birthday, Dude! See how hard we worked to bring you into this world?
The Dude with his Grandma. What would we have done if she hadn’t been an Internet sleuth?
Facebook, July 2012: Yesterday, trying to get his shorts just right in the face of PANDAS sensitivity, I hear him mumble: ‘Oh my God! What are we DOING?’ Sounded just like me. Ugh…
So, yes, as you can see above…there were still moments of laughter and joy!
We made it to mid-July 2012. I left the new doctor’s office with a lot of guilt and stress but also hope. I got the sense that she felt she could help us and, up to that point, I hadn’t really experienced that anywhere else. As mentioned in my last post, I also left with a book, new dietary restrictions, a list of supplements and an order for blood draw.
With regard to the book, The Autism Revolution, I wasn’t convinced that it was going to be applicable to us. I read it cover to cover, however and began to understand the relevance. Remember, the doc was pretty clear that The Dude didn’t have autism but that I was supposed to read this book and apply it to what I knew about his symptoms and PANDAS. While I’m sure there was much more there, what I took from the book was this:
The author, Dr. Martha Hebert, doesn’t believe that autism (PANDAS?) is a fixed condition that children develop and keep for their entire lives. She believes it’s treatable and can improve.
She focuses a great deal on the ‘insults’ to the body that occur and pile up, thus causing a child to develop conditions such as autism and PANDAS.
She sees the body of the child with one of these conditions as an interconnected web of bodily health or illness. All the systems in the body are interconnected and you have to look at all of them to find the places that need to be shored up.
She believes that improving health in one area of the body can have a significant impact on other areas.
She provides some guidance about how those improvements might be made:
Understand what an autoimmune condition is. Remember, the A in PANDAS stands for autoimmune. I needed to come to understand that my child’s immune system was mounting a response to bacteria, inflammation, etc. but that it wasn’t an appropriate response. While you or I might get a sore throat and feel rundown with exposure to strep, The Dude’s body was attacking his basal ganglia instead of the unhealthy ‘intruder’ and causing his autonomic nervous system to do strange things.
Focus on the gut/brain connection – heal the gut and help the brain. This idea relates directly to the doctor’s recommendations for supplementation and dietary restrictions. I knew nothing about the blood/brain barrier and the impact of gut health on brain health. In 2012, that was all new news to me.
Reduce inflammation in the body – also a huge concept that I needed to understand with regard to supplementation and diet. The foods that we were being advised to remove and the supplements we were being advised to give were all related to the idea of decreasing inflammation for The Dude.
Reduce stress to allow the body and brain to better heal. I understood this recommendation but had a lot of uncertainty about how to reduce stress for a 4 year old. Honestly, I couldn’t imagine why a 4 year would have stress.
Do blood work to help you understand what you can and can’t control. I.e., I can’t control whether or not my son has a genetic anomaly but I can control whether or not he’s exposed to heavy metals.
Understand that strep is not really the enemy! This was the hardest one for me to ‘get.’ It actually took years and several additional conversations with doctors for me to understand: while strep was causing my son’s symptoms, strep wasn’t what we were trying to avoid. Putting my boy in a bubble wasn’t an option but reducing the inflammation level in his body so that a strep exposure wouldn’t send him ‘over the top’ was absolutely possible.
I realize that’s a whole lot of information in 10 bullets. Well, that’s just a synopsis and a glimpse into what I was able to take away from the book at that point in our journey. I’m sure there is lots more there. If you or someone you love has PANDAS, another autoimmune condition or are on the spectrum, please read the book. I’m sure I’m not even beginning to do it justice!
While a lot of the book’s science was over my head, I did take away some comfort and insight from reading it. For one, I became more willing to introduce and enforce some dietary restrictions for The Dude. As you’ll probably notice if you keep reading, I really struggled with the food restrictions. I come from a long line of food pushers (Hi Mom! Are you sure I can’t get you anything?) and folks who celebrate with food. The idea of forbidding my child to eat candy, cake, ice cream and the like was sad to me. I felt like I was robbing him of some of the joy of childhood. Luckily, my husband, who also follows some specific dietary restrictions, didn’t struggle with this part of the recommended treatment plan for The Dude. He consistently reminded me how important it was for us to help him and that these food guidelines could be an integral part of helping him get better. I followed along reluctantly because, more than anything, I wanted my son back and I wanted him to be able to be happy and healthy. If food was the price, we’d pay it.
At this point in the game, we were only restricting food dye, gluten and dairy. Over the course of the next year, we would also be advised to remove corn syrup from The Dude’s diet. If you aren’t aware by now: if it tastes good, it has gluten, dairy, food dye or corn syrup in it! Luckily, my son was only 4 and still pretty malleable in the food department. As we switched him from macaroni and cheese to dairy-free, gluten free mac and cheese with no yellow food dye…he barely seemed to notice. We were able to find almond milk ice creams that were passable to him and gluten free donuts and cupcakes that made him feel like he was still getting ‘treats.’ Candy was the biggest struggle. 5 years later, I have lots of sources for candy that meets his dietary guidelines but, at the time, we were ‘taking away’ Skittles, M and Ms and Starburst. That’s super hard to explain to a four-year old and was a tough pill for me to swallow. As late as last year, The Dude and I were talking about things he would change in the world and in his life. He mentioned that he would ‘get rid of his PANDAS.’ I was saddened by that answer but thought I understood. When I asked why, however, he responded, ‘Because Mom, I really want to try M and Ms!’
And, don’t even get me started on other people. My mother became a one-woman food investigator…constantly showing up with new foods that met (or that she thought met) his dietary requirements. We had some hits and some misses and some ruffled feathers on both sides of the table. My mother-in-law still doesn’t get it and we have resigned ourselves to just taking food to her home whenever we visit. Outside the house, in restaurants and at birthday parties and the like, there was a lot of explaining. I once made the mistake of telling a server that we didn’t want bread because my son has a ‘wheat allergy.’ He (kindly) brought the bread anyway because ‘this is sourdough, not wheat.’ We stocked The Dude’s pre-K and kindergarten classes with acceptable snacks and were really touched as 4-5 year olds started coming up to us saying, ‘Mrs. Navin…does this have gluten?’ We got emails from parents late at night saying that their daughter was in tears because she was bringing popsicles for her birthday and just realized that The Dude couldn’t eat them. It took a village…and luckily, most of the time, we had one.
On top of all of the food drama we were introducing, there were supplements for The Dude to take several times a day. As I mentioned last post, these included Enhansa, fish oil and magnesium to start as well as a special liquid vitamin and a liquid mineral blend. While I cannot stand to even get the fish oil on my hands, The Dude swallowed a small dosing cup 1/2 full of the liquid twice a day without complaint. He still does so today and every time I see him do it, I’m shocked and appalled. But we were lucky – the boy doesn’t balk at fish oil.
The Enhansa, magnesium, vitamins and minerals were a different story though. The Enhansa and magnesium came as capsules but there was no way The Dude (at 4) could swallow them. The vitamins and minerals were apparently not tasty and we couldn’t get him to drink them easily. Those difficulties led to almost 3 years of mixing concoctions in almond milk and/or 100% juice 2-3 times a day. We poured capsules into milk, broke capsules open to store the powder and distribute it with a little scoop, refrigerated liquid vitamins and minerals and administered it all every single day in a sippy cup. I’m embarrassed to say that, for this very reason (i.e., it’s much easier to shake up a concoction in a sippy cup than stir it) The Dude used a sippy cup for his morning and evening beverages until he was over 7 years old. I joked with my husband that, if the police ever broke into our home for any reason, the powders and empty capsules and scrapers, etc. would have them convinced that we were operating some type of drug lab. Travel was a nightmare as we were constantly loaded down with bottles of supplements that had to be reviewed by TSA and needed refrigeration.
Luckily, The Dude is (as I’ve said) super easy going and never objected to taking the supplements. Even as the list got longer (I’ll update you about what was added as we go along) he only ever refused to take one supplement. I can’t remember what it was called but, in his defense, it smelled like vomit and must have tasted similarly. The doctor didn’t even object when I suggested that that supplement wasn’t going to work for us – she must have known that it was repulsive and quickly prescribed something else!
Apparently, I’m feeling wordy today and haven’t even gotten to the first blood draw part of our story. I’ll be sure to cover that and the results of that draw and what they meant for us in my next post!