So let me explain.
Camden's myoclonus (see post titled lemonade) raised some concerns for his future. The doctors were positive that as far as the myoclonus goes it wasn't affecting his brain when his episodes happen. What no one could be 100% about was the possibility they would go on to affect his development, or if he already had an abnormality that brought about the myoclonus. Make sense?
So Camden's kind of a late bloomer in some ways too. He struggled with nursing. Had bad bad reflux. Had MSPI. Both things caused by just a little bit of an immature system.
So at Camden's 9 month appointment he wasn't totally meeting all the things for his average age. Plus we discovered at that appointment he was also anemic. So the doctor told me with most children he would say don't worry let's keep seeing how they do, children learn differently. However, with Camden he said lets not wait let's make sure we stay on top of things JUST in case. With the reflux, MSPI, myoclonus, anemia, developmental delay...all combined the doctor said it is too hard to know what affects what with Camden and it wasn't worth risking missing a developmental delay. So we had him evaluated as a precaution by a group of therapists.
This is where I began to get frustrated. Camden at this point was still not eating solids and struggling with textures. So I knew that he was probably going to qualify for oral therapy. Babies only qualify if they are at least 25% behind. Camden also wasn't crawling yet.
But he began crawling a week before the evaluation and doing almost all the things he wasn't doing two weeks before at the doctors appointment.
But as I met with the therapists I felt Camden was kind of labeled as "behind" before the evaluation even started and he began being nitpicked even when I said he could do something at home he just wasn't wanting to do for them. He qualified for therapy which I was fine with and I kept moving forward.
The therapists suggested a swallow study to rule out any physical abnormalities causing the aversion to chunks or texture. I was okay with this plan.
The swallow study as you all know revealed still a severe reflux we didn't know was still there because it's now silent reflux. (He doesn't throw up anymore like he did before)
Everything was normal physically.
For whatever reason I feel like God was waiting for me to find that answer.
Reflux.
Up until this point I have been struggling to rely on my lack of knowledge (never had children before) my "instincts", and the advice of everyone around me.
His pediatrician says "just in case"
His therapist says he needs more words.
His neuro says this.
His GI says this.
So hard. Each doctor connected a different variable and ignored the others to decide something else was to blame.
Each doctor saw an issue relating to an area which they specialized in.
The GI wanted an endoscopy. Because Camden had great tone and weight gain but still abnormal eating habits and bad reflux.
The therapist came and decided he was delayed in motor planning and speech as well. She thought the reflux was not the problem and that his aversion was sensory motor and that he could possibly grow up to have ADD. She actually gave me a packet of possible learnig disorders Camden could have due to sensory motor issues lol.
The neuro said due to his slightly low tone and poor weight gain (remember what the GI said?) it could be an illness and ordered blood work.
Then there are my friends and my family who actually KNOW Camden and actually have raised children telling me he is completely normal.
Sometimes I felt judged by both sides. Like I was crazy for just doing what the doctors were telling me to do. Or ridiculous to the doctors for suggesting other options.
I felt virtually no guidance In the process and just chose to take comfort in the fact that I knew I was doing literally all I could and pursuing all routes to provide the best options for little Camden.
I've contemplated taking him out of therapy before it's really began. She's come to observe Camden and she's so so critical. When she first came Camden said "dada" and "baba" and "ah" and "eh". She said that wasn't enough letters he had learned to use.
By the next week he added "wa wa" "ta" "na na" (imitating no)
"La" and "uh oh"
She said he needed more. She said his imitation of "no" being "na" was a red flag. And that he needed an m and a th and an s and an h.
"Th" really? My 10 month old has to make the "th" sound??
She said he needed to be more imitative. I showed her how he imitates a surprised face. How he claps. How he clicks his lips when I do. His high five. His kisses.
Not enough. She said he had poor motor planning.
I asked what that meant.
She said he needed motor planning before he could do skills like jump.
I said he jumps all the time.
Not enough.
All her suggestions were based on the original evaluation that lasted 20 minutes and they wrote out things for her to watch for.
It didn't matter how much Camden improved she just wouldn't be positive.
It was making me so angry!!
Then that blessed swallow study!
I was given one concrete answer with PROOF.
reflux.
he has reflux.
Peace. Peace was all I felt that day. And that peace grew into confidence which grew into understanding.
The person who helped me with the swallow study suggested that she thought Camden's aversions were due to reflux. Period.
Simple.
I upped Camden's reflux medicine.
I started going slower. I introduced foods to him while he was in my lap to offer comfort.
I let him play with food in his hands so hopefully he would be okay with it when I put it in his mouth.
I did things to help his fear of food due to food always causing him pain in the past.
And you know what? He eats ONLY real food now. (well and has bottles) but no purees!
Has been for over a week every meal.
Breakfast. Pancake, eggs, fruit.
Lunch, sandwhich pasta cheese fruit anything!
Dinner: meat potatoes fruit veggies.
The Sky is the limit. And he feeds it all to himself.
He had a neuro appt yesterday. It went well. She feels Camden's doing great. She wants to recheck him in 2 months and if in 2 months he's still considered "delayed" by developmental therapists then they will look into neurological symptoms. But she now feels a lot of his complications were the reflux. A reaction to constant pain.
The myoclonus is virtually completely gone now though and we are feeling confident.
Last night the therapist came. I was so excited to show her he can eat. I knew she couldn't possibly tell me he was still behind In sensory motor. (The only thing he actually qualified for-- she diagnosed him with MORE the first day she showed up)
Then she said it he's probably okay to be discharged!! She's never even done any oral therapy yet lol.
But she's going to come a couple times for the next two months so that we have an evaluation to take to his last neuro appointment and so we can be "sure" he is okay.
I feel confident though.
Camden learns something new almost daily.
Someday I think the doctors will be able to see it that way too (;
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