One of the many reasons we moved back to Minnesota is the availability of pediatric specialists. We have made a couple of trips to Minneapolis in the last month in order for Clark to see a geneticist and a cranial/facial specialist.
After everything came back relatively normal on the MRI and completely normal on the EEG, we were advised to see a geneticist in the event that there is an underlying genetic condition causing both Clark’s developmental delays and susceptibility to seizures. We met with a geneticist in September at Childrens of Minneapolis. The appointment went well but we came away with the feeling that she did not see anything specifically related to a genetic syndrome. They did draw blood to do a general chromosomal test. They also gave us a referral to see a cranial/facial specialist since Clark has a ridge at the top of his skull that they thought might be concerning.
We just heard back from them today and the chromosomal testing came back negative, or normal. To this we say “yay!” but also feel a tad bit discouraged that we do not have a cause for all of this.
We met with the cranial/facial specialist last week. He examined Clark’s skull and his palate, which had never been looked at before. Both were quite normal. We are encouraged that Clark does not need surgery of any kind, but still frustrated by his eating difficulties.
We had an informative discussion with the speech therapist at the cranial/facial clinic. Based on what we told her about his eating difficulties from birth, related to bottle feeding, she said he should have been receiving eating/speech therapy for quite some time. She referred Clark for a neuro/psych evaluation which will evaluate his development and IQ. That report will help us advocate for any special services or therapy that Clark needs that cannot be provided to us through the county. Clark will have that testing done in December.
Clark’s Therapy Plan
Over the last month or so, Clark has been evaluated a number of times by the special ed coop here. We will meet with them this week to put a formal plan into place. We do know that he qualifies in three areas for therapy and that he will be receiving therapy three times per week. We are really happy that Clark’s delays are finally being recognized and that the coop is giving us the resources he needs for that. We do feel a little discouraged that for so long we have heard “he is a little behind, but every kid is different”, and practically overnight he has slid off the scale in three areas and the coop here has essentially said “lets throw everything at him that we have”. It is typical for delays to become more apparent as kids grow, since there are more milestones to miss, but as parents it is frustrating to know something is wrong early on yet not receive the help we so desperately tried to find. We are really grateful to the coop in Morris that qualified him earlier this year by circumventing the testing results because they could see he needed early intervention then. Otherwise, this would have been the first therapy that he qualified for, and we truly believe his therapy earlier this year was so beneficial for him.
I often get asked by people: so what exactly is wrong with Clark? Because when you see him, he is a very busy, social, and happy little guy and seems quite normal if a little small. The biggest thing for Clark is that he appears to have a motor planning issue. His body is capable of doing all of things it should do, but his brain is unable to plan the steps to do it. That, together with his low muscle tone, means he has to work harder to do everything. Thankfully he is extremely determined which has been such a blessing in helping him learn new things and meet those important milestones.
The most frustrating part of Clark’s delays is his eating. Because of his motor planning difficulties, he has not learned to chew yet. When he is first evaluated by a new therapist or doctor, they automatically assume he has a sensory issue since most kids his age that won’t eat refuse certain textures. However, Clark will try to eat anything. He refuses to eat his baby food at meal time if we try to feed him that while we are eating, and begs for our food. If the food is something that will disintegrate or is soft enough to swallow after sucking on it, he is able to eat it (i.e. crackers, bread or muffins, bananas). Anything that needs to be chewed before swallowing (meat, non-pureed fruits and veggies) he will spit out after sucking the flavor out of it.
Clark also had trouble eating off a spoon early on because of tongue mobility issues and not using his lips to eat, which has made the whole eating process even harder. Try eating off a fork or spoon without moving your tongue or lips sometime, it is nearly impossible. He seems to be gaining some motor skills in that area though which is really encouraging.
Because of Clark’s eating difficulties, he is still on bottles and pureed baby food as his main source of nutrition. He gets up once or twice a night for a bottle and I can hear his tummy rumbling when I get him out of bed for it. We do mix his formula stronger so he gets more calories. As his second birthday is fast approaching we would really love for him to be able to eat normal, nutritious meals with us. The cost and the hassle of formula, bottle supplies, and baby food would be nice to say goodbye to as well.
Since his eating difficulties are related to an oral motor planning issue, Clark also does not talk yet. Our two older boys did not really talk until they were 2 but they had a handful of words by 18 months. Clark does not have one word, no dada or mama. Not even no. He has been resistant to learning sign language as well. It is not quite clear if he is cognitively unable to learn sign language or if he just doesn’t like it (he is, after all, a toddler). Our therapist hopes that he will be able to learn to communicate through pictures at the very least. He is really good at communicating what he wants through sounds and gestures, but as he gets older he is getting more frustrated at his inability to communicate exactly what he wants.
Besides his delays, Clark’s chance of having another seizure is always in the back of our minds. We know that his Montana seizures were caused by his vaccinations, but he also had that first seizure in March. Clark’s seizures are considered to be tonic clonic seizures. They are scary to watch but the seizure itself does not do any damage to his brain. The problem with Clark’s seizures are that they are long and that they don’t seem to like to stop on their own. The biggest risk for him is lack of oxygen. Like I said in a previous post, he was blue when we got to the emergency room in Montana after a little over 10 minutes of seizing, and it took them another 14 to get him to stop seizing. We are really thankful we heard him on the monitor when he started seizing and since then we have kept a baby monitor close at all times when he is sleeping.
When we spoke with the cranial/facial specialist, he told us that the general consensus from all of Clark’s medical records is that he seems to have a lower threshold for seizures than the typical child. They don’t know why since the MRI and EEG came back normal, but he does, and they seem to be triggered by fever or infection (thus the complex febrile seizure diagnosis). So basically, we were told to not let him get a fever and that if he does, do everything we can to control it and keep it low. The hope is that he will simply outgrow his susceptibility to seizures, although we were told he does have a 1 in 4 chance of having another seizure. Thankfully, he is a sturdy little guy and doesn’t seem to catch anything and everything but we are nervous for the January-March months, which seems to be when viruses incubate and grow and cycle back around endlessly.
So that is the long and the very long of it. We have one more follow up with the geneticist and Clark’s neuro/psych evaluation in December. Other than that, we can start getting settled into life here, get in a schedule for therapy, and try to focus on our other kids a little more.