More than just growth (Part 3)

When E turned 1, we moved from Pennsylvania to Florida. He was still receiving occupational therapy for his swallowing issues, and we were, thankfully, able to transfer those services over to Florida’s early intervention program. He wasn’t able to eat actual solid food until he was about 15 months old. Any time I tried giving him even stage 3 meals (with chunks in it), he would gag and seemingly choke. It was frustrating and scary.

He continued to have issues with illnesses, ear infections, etc. He had his 2nd set of ear tubes sometime within his second year. We visited a new gastroenterologist as he was still having symptoms of GERD. And still on 2 medicines for it. So, when he was about 18 months old (or so), he had an upper GI (endoscopy) and a PH probe. He had a tube running from his nose and down his throat all attached to a monitor that he had to carry around for 24 hours to measure the acid. Bottom line, testing showed that he still had irritation in his esophagus from GERD and he still had pretty high levels of acid. At almost two. Again, this was not normal.

New state meant new doctors, and I continued to argue with them that he was not well. He also continued to fall down on the growth charts. I continued to be put off.

Until, finally, good or bad, he literally stopped growing. “Normal” growth is 2-2 1/2″ per year. Between his 2nd and 3rd birthdays, he grew maybe 1/4″. And fell off the growth chart completely. This was huge, because it finally got a doctor to take notice and send us to the right specialist – the endocrinologist. In my head, I was thinking “ok, that’s one problem solved, what about everything else?” But then I started researching growth issues. And it blew my mind.

Every single issue he had – not just the growth, but the swallowing issues, the ENT problems, the infections, the reflux, the gross motor delays – every single one could be traced back to a lack of growth hormone. All of it. I sat there looking at the computer wondering how it could be so simple, yet every other doctor missed it! My mouth hung open, I turned around to my husband and told him what I found. He was also floored.

I started poring over information on growth hormone deficiency. One site was recommended by the endocrinologist, www.magicfoundation.org. In the simplest of terms, the pituitary gland secretes growth hormone throughout the body. It’s necessary for muscle growth, bone health, basically the growth of every single organ in your body. So, gross motor delays were because of weak muscles. Reflux and ear problems because those areas did not grow as they should.

We were so fortunate to get referred to one of the best pediatric endocrinologists in the area, Dr. Paul Desrosiers. Or Dr. D, as everyone calls him. He took one look at E and his charts, declared that he strongly suspected growth hormone deficiency (GHD), and said we just have to prove it. The first step in the process (and it’s a looooonnnnngggg process) is a hand x-ray. They take a simple x-ray of the left hand to determine bone age. His was definitely behind. The second step is a growth hormone stimulation test. They basically use an agent to “stimulate” the growth hormone, as normally it is sporadic and occurs during sleep. Throughout, they take blood samples at certain times to test the level of growth hormone. They use two different agents in one test. We had to have this done twice. The first test, he failed one but passed the other (barely). Passing in this case was bad. Insurance companies need two failed “stim” tests in order to approve growth hormone therapy (GHT).

Next step in the diagnosis is an MRI of the brain. Given that E was not quite 3 at the time, this required sedation. He’s had quite the repertoire of operations. The MRI is necessary to check on the pituitary gland. Growth hormone deficiency can be caused by a tumor or other abnormalities of the pituitary. In most cases, it’s idiopathic, meaning there’s no known cause. Thankfully, there were no issues on his MRI.

Now that we had a diagnosis (which, for the record, is officially “pituitary dwarfism”), the real fun began. Treatment. There is no magic pill filled with growth hormone. The only way to administer it is injection. Every day. But I would do anything to make my kid healthy again. Whatever I needed to do. The other issues with GHT are that it requires preauthorization from the insurance companies, and is really, really expensive. When we first started it, we were lucky with only a $25 copay per month. Now, I have a 30% coinsurance on a medication that costs over $4000 per month. And no, that’s not a typo.

Once E started injections, he rapidly became healthier. The first differences we saw were an increase in energy and stamina. Before starting treatment, he could barely make it on a walk around the block without pooping out. After treatment, he was able to go multiple times. Then the growth really started. Most kids have a period of “catch-up” growth – the growth that should have happened if he was “normal.” I looked at his measurements, and figured out that he grew a whole foot in the first 2 years of treatment. That’s an average of 6″ per year! He’s on track on the growth chart to be about 6′, which is far taller than he could have ever expected without treatment.

Next post, I’ll get into the lessons learned from this experience, and how he’s been doing since. This post is getting long!

Thanks for reading!

Kim

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More than just growth (part 2)

So, the first year of E’s life was rough. That’s putting it mildly.

I work full time, but I lost a lot of work in the first several months of E’s life. He was sick. All. The. Time. Not even an exaggeration. And every illness he had would be the worst that anyone in the family got. If his older brother caught a cold, E would end up with RSV, double ear infections and bronchiolitis. Pretty sure we were at the pediatrician’s once a week. With the occasional week off.

At about 5 months old he did have RSV with bronchiolitis and double ear infections. We had to start using a nebulizer every day. After 2 rounds of antibiotics, he was still spiking a fever so he needed a shot of antibiotics.

His reflux was so bad and caused him so much pain, he barely slept. I tried all the tricks – lifting the mattress, holding him upright after feedings, special formula – but nothing worked. He “comfort fed” – wanted to drink constantly, but he just spit it up, making it worse. He was even on two different reflux medications. He didn’t nap, he cried constantly. I was exhausted.

When he was a few months old, he had the worst diaper rash I’d ever seen. His skin was raw. You could only wipe him with a soft cloth and water. And I was not leaving him in dirty diapers. Found out it was a yeast infection causing it.

At about 7 months old, E was still not rolling over, sitting up, or doing any of the developmentally appropriate motor skills he should be doing. In addition, he could not eat solid food. When the time came that most kids would be eating Cheerios and chunky foods, he would gag on it and throw up. We had him evaluated through early intervention, and they provided both physical and occupational therapy. With some help, he was able to start crawling by 1 year. The gagging issues went on a little longer. Poor little guy couldn’t even have cake on his 1st birthday. 😦

He had constant ear infections, so we headed to the ENT. (I used to joke that we saw all the pediatric -ologists that year: gastroenterologist, immunologist, etc… We just never made it to the right -ologist that year.) The ENT scoped him to take a look at his adenoids, and they were so large that they were almost completely blocking his airway. So at 10 months old, my baby had his first of several surgeries. He removed the adenoids and put his first set of tubes in his ears. (That’s right, his first set. There would be more.)

And throughout this year, every time we ended up back in the pediatrician’s office, I begged them to figure out what was wrong with my child. This was not normal! I was not a nervous new mom – this was my 3rd kid! I knew in my gut that everything was related and there was something larger going on. At some point, I even noticed that he was going down on the growth curve. Mentioned it a few times, asking if it could be related to his other issues. I was assured, by a few doctors, that it didn’t mean anything. After all, he was still on the charts! WRONG!

At the time, our pediatrician was within a larger practice at a teaching hospital. So, when we had to go in for a sick appointment, we would see whoever was available. A few of the doctors would condescendingly tell me, “Well, he is in day care. He’s bound to be sick more often.” With smoke coming out of my ears, I would explain that I had two other children in day care, had been since they were babies, and they never got this sick. I argued, I started crying every time I was in there. I was just so exhausted, wrung out, and hated seeing my baby boy so sick.

I decided if the doctors weren’t going to do anything to figure it out, I would. I started researching, plugging in everything I could think of. Looked at the big sites and the obscure ones. I read very technical articles and papers. I considered an immune deficiency – so we visited the immunologist. All tests came back normal. I couldn’t figure it out on my own.

So, by the end of just his first year, this is what we saw:

  • Multiple infections and illness, usually worse than others
  • Surgery to remove enlarged adenoids and fluid in ears
  • Severe reflux
  • Gross motor skill development problems
  • Swallowing problems
  • Yeast infection/diaper rash
  • Beginning to go down on the growth curve

Annnnnnnddddd, this was just the year one.

Til the next time…

Kim

More than just growth (Part 1)

In order to tell my story, I need to tell their story.

I have 3 boys, each with a myriad of medical and psychological problems. This is the story of my youngest, E. His issues started at birth, and it’s basically the first time I realized the doctors didn’t have all the answers.

E was born in 2006 via elective C-section. Yes, I chose to have the C-section after 2 other horrendous deliveries. I was going to new doctors and delivering at a different hospital (long story), and when I told them why I wanted the C-section, they were ok with it and completely understood. My previous births were THAT bad (amazing that I even chose to have another one!).

Anyhoo, I was older when I had him (38) and it was a tough pregnancy. Physically as well as psychologically. I suffered from prenatal depression and had to go on meds. My body had a difficult time handling the strain of pregnancy and I was in pain a lot. But overall, I did love being pregnant. And knowing I would not have to go through a 22 hour labor or 2 hours of pushing or a vacuum extraction definitely helped!

One of the first things I heard once he was born was my husband asking what was on his hand. The nurses didn’t know, but we figured we’d ask when the pediatrician came by. Basically, he had a birthmark, but it was raised, flesh-colored and extended from his left thumb to his wrist. Did not look like any birthmark we had seen before.

I was not nursing, but fed him formula later in the day. It’s all a bit fuzzy – the drugs were good. 😉 But, I did notice that he had reflux, and it seemed to be pretty bad. I’d been through reflux with the other two, so this was not new. I kind of expected it at this point.

When the pediatrician came by, he confirmed the reflux (duh!), but admitted he had no idea what was on his hand and advised me to ask his regular pediatrician. Huh.

Aside: There’s a running joke in my family that if there’s a weird, unusual, less common or strange symptom or disease, I will get it. I once decided to taste a drop of fluoride drops they give babies. I broke out in hives for 24 hours. I had 2 herniated discs in my lower back. About 95% of people with lumbar herniated discs get them in the L4/L5 or L5/S1 areas. Mine were at L2/L3 and L3/L4, where less than 4% get them. So, yeah, running joke. Apparently, this was extending to my kids…

First post hospital check on E, the doctor looked at E’s hand, conferred with other doctors, and finally had to look up in a medical book what my kid had. Diagnosis: Linear Epidermal Nevus. “Linear” meaning it follows a line. “Epidermal” meaning skin. And a “nevus” is a mole. Not a common birthmark, and there’s a syndrome associated with it but usually that’s when it affects more of the body. It’s caused by an overgrowth of skin cells. His was limited to his thumb/wrist area with a little more going up the arm a bit.

This was just the first of many, many problems E had that year…

Since this is the first week of life I’m still on, I’m stopping here and picking it up later. Otherwise, this one post will be a book. So much happened in his first year, it will take a lot of words to get through. So, to be continued…

Kim

Getting empowered … one small step at a time

I realized something this week.

I’ve never been really good at any one thing. I don’t have a talent. I’ve never played music. I’m not athletic (understatement). I’m sort of a geek, but more on the fringe of being a geek, if that makes sense. I’m pretty good at using Excel, but can that really be considered a talent?

But in the last few years, and what I just realized, is that I’m pretty darn good at advocating for my kids. I’m a warrior, a fighter by nature. And I’ve channeled that, by necessity, into fighting for services for my kids. I’ve gone up against doctors, schools, school districts, psychologists, teachers… and won. Not always, but enough. And each time, I gained more confidence to continue the fight and win. And by “win” I don’t mean that I got everything I wanted. But we got what we needed. For the moment.

I’m not really a comfortable writer, but I needed to tell our stories. We all have it in us to be empowered and fight for what we believe is right for our kids. No doctor or teacher is infallible, they all make mistakes. And only YOU know your child best. YOU have the power. You just have to find it. I’m hoping my words will inspire someone to find their own power to stand up for their kids…and win.

As for the title of this blog, well, I’ve been saying I’m THAT mom. You know, the one that the schools cringes about when you contact them. The one labeled a “bitch.” And yeah, I’m ok with that. I’m not in this to make friends. I have plenty of friends. I do what I have to do for my kids.

Happy reading!

Kim