That’s what I’ve had to say quite a bit the last few months to doctors and specialists. I was taking Holt, by himself, to doctor’s appointment after doctor’s appointment. Every time I would start to explain something, I would always say “they” instead of “he”. I had to make sure everybody knew that I wasn’t some crazy person who thought her child was actually more than one child; or that I just randomly speak in the plural. I had to explain that he was a twin…that we had someone to compare him to.
“He has an identical twin, so I speak in plural”.
Back in July, Husband and I started noticing something funny about Holt. He started falling. Not tripping, necessarily, but he would be walking and it looked like his legs would just buckle underneath him. At first, I thought he was just falling on purpose so I would pick him up. The boys had just started walking in February, so they were still pretty unsteady. Win had always been a little further along on the physical development road than Holt, so I just thought it was that.
Eventually, it happened enough that we called the doctor. I was hoping it was an ear infection, just a balance issue. Like every other time I thought they (see there it is, that plural speak) had ear infections and was wrong, I was wrong this time too. His pediatrician couldn’t find anything wrong. She sent him for X-rays of his legs and blood work. It all came back normal. She thought it might be a virus; certain viruses can sometimes cause muscle inflammation and weakness, and that’s probably what it was.
So we waited.
In the meantime, he was getting worse. He didn’t want to stand up and walk around. When he did stand up he put his hands on his knees to help push himself up, like an old person (or me, sometimes). If he was sitting still, he seemed content just playing like that.
It seemed to be worse in the morning, after he woke up, and would get better during the day. So by the afternoon, he looked different, better somehow.
One morning he didn’t have enough strength to get his sippy cup to his mouth. Whatever this was was now affecting his arms.
I called the doctor again that morning, but dropped both the boys off at daycare and headed to work. I think I thought that if I continued on like everything was normal…everything would be just that, normal.
It was a Friday. I had been at work about an hour and I got a call from the nurse at our pediatrician’s office. She said that they had called the pediatric neurologist two hours away and that she wanted to see Holt immediately. I was an hour away from Holt and, at that time, I was the only one that had car seats, so we were really three hours away from this neurologist. So I left work and drove to get him. On the way there, the pediatrician’s office called back and, while trying really hard not to alarm me, told me that instead of driving him the two hours myself, to take him to the local emergency room so that they could evaluate him and decide if he needed to be transported or not.
Transported. My almost 18 month old might need to be med-evac-ed?
When I picked him up Holt had slumped down in a chair while eating lunch and was crying because he couldn’t get himself back up again. I was so terrified. We took him to the local ER and after a while of having to convince the ER doctor that he wasn’t “fine”, we were eventually cleared to drive him ourselves to the neurologist.
The neurologist still thought nothing was seriously wrong, so she sent us home with instructions to increase his dose of ibuprofen and call her the next day.
So we did.
Everything in our hearts wanted him to be better the next day…but he wasn’t. After a couple days and a few doses of steroids, Holt still wasn’t getting better. The neurologist put him in the hospital.
(Isn’t he just the cutest (: )
After a lot of scary tests (MRIs, CT scans, spinal taps) it was confirmed that Holt had Guillian-Barre Syndrome. This is a super rare syndrome (like 1:100,000) that is even rarer in kids Holt’s age (18 months at the time). It causes ascending paralysis (yes..that’s scary) or muscle weakness starting in the feet and going up the body until it possibly affects the respiratory system. We are lucky that it was caught in Holt early and he was treated with medication. Doctors aren’t really sure why it happens in some people and not in others (like Holt’s identical twin) but they believe it is caused by an over-reaction of your immune system to a common infection (viral or gastrointestinal) or vaccines. One’s immune system is attacking a virus, but after the virus is gone, the immune system doesn’t stop fighting. It attacks the covering around the nerves coming out of the spine. So a week or so before he started showing symptoms of GBS, he had bronchitis; that’s where they think it started.
He was released from the hospital on August 2 (his half-birthday, for which we all did a dance). He went from not being able to roll over, sit up on his own, bring his hand to his mouth to feed himself to walking and throwing a ball all in a three day period.
If this had happened just over 20 years ago, the only thing we could have done was wait for it to run its course (which it would have) because there was no medicine to help at the time.
Even though he reacted fantastically to the medicine, about 6 weeks after his first treatment, Holt did start to show symptoms of GBS again. Because it kept coming back, we were nervous that it might be the chronic version of GBS, CIDP (even rarer than GBS, one’s chances of having CIDP are 1:1,000,000 and even rarer in children Holt’s age). Extra boosters of the medicine (IVIG) helped with the relapses.
We think we have made it through the worst of all of this. At his last follow-up, I described to the doctor that he felt like a different person, his old self. He seemed happier and more spritely and laughed more. His doctor said it looked to her like he “turned the corner”; like the GBS was really on its way out.
He (and the whole family) recently had a nasty virus. And the symptoms started to come back. We can tell because Holt doesn’t want to walk (on his feet) up stairs. He wants to crawl or be carried. When he is his best self, he always wants to do it himself. I took him back to the doctor and she prescribed another treatment of the medicine. Just like the other times, the medicine works quickly and effectively, thank goodness! Unfortunately, our doctor can’t really tell us why it’s coming back when it seems like it had gone away. I believe, even though she hasn’t said this, that Holt is her youngest patient with GBS. It really does seem like we are all flying by the seat of our pants and no one knows what to expect. I asked Holt’s doctor at his last appointment about the CIDP and if it was more possible that he has the chronic version and not the acute (GBS) version. She doesn’t believe that he has CIPD based on his age and how quickly the symptoms came on, BUT she said the great thing was that the medicine works, and works quickly, for Holt. There are some tests that can be performed on him that might indicate CIPD, but the treatment would be the same. So, I’m not really sure I want to know either way. Either way, we treat it the same way.
an oldie, but a goodie.
I believe in my heart that this will not last his whole life. Husband and I want to think that he’s so young, and his immune system is still developing, and this crazy thing hit him at such a vulnerable age that it will take him a while to recover completely. It takes some adults months and years to recover. Children are ones that recover quickly and nearly fully.
A few weeks ago we thought that this was over, done. We still believe that it is on its way out. He may need more treatments of IVIG, but it works, quickly. And we are lucky for that. Every time a relapse happens, I’ll catch myself down and sad. It’s so hard not to compare Holt with Win. Win doesn’t have any of these problems. Win can run and jump all the time. Even at Holt’s best, I can still tell a difference, even if no one else can. I start to feel sorry for him and sorry for myself. As soon as that happens, as soon as I start thinking forward (way too forward) about what his life might be like if he had this for the rest of it, I end up taking him to the doctor to be checked out. Going to a pediatric neurologist is scary as a parent. Not only do you have to be there for your child, but you see a lot of other sick kids. Kids that will probably be sick for the rest of their lives. Kids who may not live a “normal” life, or at least the “normal” life that their parents had envisioned. I see the same thing at the pediatric day unit at the children’s hospital where Holt gets his treatment. I see children that are bald, I assume, because of cancer and chemotherapy. I see little babies there, not knowing what their diagnosis is. As soon as I take Holt to these places, I know how lucky we are. Holt is a smart, precocious, walking, talking, happy child. For the most part, he is healthy. He has just had a stumbling block. This blast of reality hits me and I become all sorts of grateful and much more patient with Holt and myself. These visits to the hospital and doctors office adjust my perspective and give me a moment of grace…something I am thankful for.
I have learned to curb my plural speak. And in the end, as the boys get older, it is probably better – better that I treat them as individuals and not as the same person. Treating them as if they were the same was easier, but I know not better. Just like everything else about parenthood, this has taught me that I am not in control. Life will go on its own schedule and I barely will have input. The universe has already thrown us some curves, you know with the whole twin thing (and that turned out pretty ok) that I’m willing to trust that this will be pretty ok, too.