Therapy (and some rambling thoughts) *update at bottom*

Corrigan had therapy again this morning.  He has developmental, speech and feeding therapy.  We were waiting until after the new year before asking for more speech therapy.  He had a little burst of improvement in his speech during the Fall but new words are few and far between right now.  His mimicking has also decreased to almost nothing.

Today’s therapy was with Miss Sue.  She is his developmental therapist and we love her very much.  She reminds me a lot of my Mother-in-law and Mark often says that she seems like one of his “kin”.   She is gentle, kind and Corrigan can hardly stand himself when he sees her walking up the sidewalk.  He grabs her hand the moment she walks in the door, sometimes before she even gets all of the way in the door, and drags her over to the couch.  He then stands and bounces until she brings out the first toy.

Corrigan loves the food puzzles that Miss Sue brings for him.  He especially loves the “coke” which is his word for any drink. He is doing much better with utensils and is a hoot to play “food” with.  He will bring a piece of play food to whoever is “pretending” and say, “Mmmmm” as he shoves it into their face.  He also smacks his lips to pretend he is eating and likes to stir things in bowls to make “soup”.

(Hey Mom, check out my fork!)

Okay, time to talk about some serious stuff…

There was a window there, between late August and Thanksgiving that it felt as if the fog were lifted on Corrigan’s brain.  There was an intense period of increased learning, new skills and so much eye contact that it often made me cry happy-tears.

Something has changed in the last two weeks.

Corrigan is no longer making much eye contact and his temper tantrums have increased three-fold.  As I mentioned before, his speech is no longer improving and everything feels very stagnant.

There was a change made to his diet after our December visit to Hopkins.  His labs showed that he was on the low end of some essential amino acids, indicating that he had just gone through a growth spurt, and he needed a protein increase to bring things back to the normal range.

There was some concern because Corrigan was already at the “high” end of what was safe for him as far as total amount of daily protein, in fact they told us that he was handling a larger amount of protein than others with a similar situation, and that adding one extra gram of protein was nothing to do without serious consideration.

Again, we are doing the delicate balancing act of making sure that he has enough protein to grow but not giving him more than his body-and medicine dose-can handle without sending him into crisis.  His aminos showed that if we did not make the change though, his body would begin to catobolize  which would also send him into crisis.

“Crisis” for Corrigan means that his ammonia levels rise (hyperammonemia) and avoiding that crisis, through restricted and closely monitored diet and scavenger meds, frequent blood work at clinic, plus careful observation of his behavior are what have kept Corrigan metabolically stable for 18 months now.

Hyperammonemia is defined by Wikipedia as:

Hyperammonemia (or hyperammonaemia) is a metabolic disturbance characterised by an excess of ammonia in the blood. It is a dangerous condition that may lead to encephalopathy and death. It may be primary or secondary.

Ammonia is a substance that contains nitrogen. It is a product of the catabolism of protein. It is converted to the less toxic substance urea prior to excretion in urine by the kidneys. The metabolic pathways that synthesise urea are located first in the mitochondria and then into the cytosol. The process is known as the urea cycle, which comprises several enzymes acting in sequence.

There was much discussion on how Corrigan would get this extra gram of protein and it was ultimately decided that it was best for him to receive it through natural foods but, again, no one really knows what Corrigan’s “ceiling” is as far as grams of protein per kilo but I gathered, from the back and forth discussions between dietitian and geneticist, that he must be perilously near the top.

(Which is why we are avoiding church and other busy places right now.  Corrigan absolutely CANNOT afford to get sick. Well, not anytime really, but especially right now. If he is at the top of what his body can handle-(protein-wise)-a virus or infection could be devastating to his total load and he would be in big trouble)

They told me to watch Corrigan closely (done and done-always!) and gauge whether or not to give him that extra gram of protein by his appetite for the day.

Uh, Corrigan doesn’t have an appetite.

What I have been doing is watching how fast he drinks his formula.  If the 6 ounce bottles disappear quickly, without a fuss, then I consider it a “good appetite” day and do my very best to get that extra gram (from solid foods) into his body.  If he doesn’t want to drink, or is picking at his fries more than usual, then I do not give him that extra gram for the day.

He still has an allotted amount of protein that I have to get into him through solids each and every day. It is crucial that I never let him fall under the minimum since he is low on those aminos…but the extra gram I add based on observation of an invisible appetite.

It works out that he gets the extra gram of protein 4 days out of the week.

I mention all of this because the “fog” seems to be back at the same time that we changed up his diet.  My head can hardly wrap around the fact that a single gram of protein could send my boy into a dangerous hyperammonemic  event, causing brain damage and other things that we do not talk about, but now I have to guess…based on the most vague signals a tube-fed toddler can give…whether or not to give him that extra gram, hoping that his body is going to utilize it (with the help of scavenger meds) and not make him sick.

This tiny bit of increased protein…the impact on our lives…it is ridiculous to think that whether things are good or bad hinge on one tiny gram.

The thing is, I do not think that his team believes me about the whole “fog” thing.  I have, of course, mentioned it many times and get either raised eyebrows or glossed over replies.  I know it sounds ridiculous but I spend my entire life watching this kid.   Some days I have no idea what I have accomplished around the house, dinner is soup and a grilled cheese sandwich and an apology to my family for being so lazy…but I can tell you the most minuscule details of Corrigan’s day.

I know when the “fog” is here and when it is not. I know that when it is here the learning stops. The eye contact gets less and less.  The connection, the way he relates to us, gets fuzzy.

It is here.

And I hate it.

Corrigan was mean to Miss Sue today.  I sprang from the couch when he smacked at her, scaring the crap out of him as I came across the room to correct his behavior.  I was shocked that he would be hateful towards any of his therapists, let alone Miss Sue.

Who could ever be mean to Miss Sue?

He was short-tempered, low on patience, easily brought to tears and more unfocused than usual.  I imagine I would be too though, the kid woke at 1am last night, with terrible hiccups and was awake until 5am.  Even after getting back to bed he only slept until 7am.

So was he “off” because of his sleepless night (but to be fair, 5-6 nights a week are the same) or is it because of the “fog”?  Is that extra gram causing his ammonia to increase just enough to cause irritation on his brain?  Good Lord, this is all hard.

He did get a lot out of his therapy this morning though.  Today was the first time that he said, “bus” when Miss Sue showed him the picture cards.   He was really focused on that bus.

(really focused...)

He identified several of the pictures today and paid more attention to them than usual.

Here he is identifying “shoes”.

Corrigan lined up his favorite pictures and “talked” about each one. Granted, we have no idea what he was saying but whatever he said, he meant it!

We are working on “socks” and “dog” for the next week.

Miss Sue knows that Corrigan loves numbers so she brought over this cute little robot that helps to reinforce proper pronunciation and also chases him around the living room when a button is pushed on the top of his head.

The robot’s head…not Corrigan’s.

{oh funny me}

Corrigan can now identify 14 letters and can count from 2-10.  He has added “four” to his dialogue (“bore!”) but still absolutely refuses to speak the number one.  He will even carry around a foam number “1” and push it up to my mouth (which is how he tells me that he wants me to tell him what something is called) but no matter how many dozens of times we do this a day, he will not say it.

Aunt Erica sent up a phonics toy that goes on the fridge and teaches Corrigan the letter sounds.

…every letter makes a sound….”J” says, “juh!

In two days Corrigan now knows what sounds “J” and “K” make! Pretty cool.

But the eye contact. Man, I miss that connection.

I digress.

Miss Sue knows that Corrigan also loves to stack so she brought over this neat toy.  Corrigan is easily frustrated by “too many” of things.  All of the individual holes on this toy really threw him for a loop and upset him.

Miss Sue was trying to get him to place individual pieces in separate holes but he began to cry and I am pretty sure this is where he hit her.  He just wanted to build towers with the pieces and not focus on those scary spots.

All was quickly forgiven though and Miss Sue brought out a toy bus for him and he sweetly moved across the couch and snuggled up into her lap.

I guess this is how a 2-year old apologizes.

We are so lucky to have the therapists that we have for Corrigan. Each of them…Miss Sue, Miss Michelle and Miss Kelley are such selfless and sweet people.  We consider them family and thank them so much for the dedication they show, each and every week, to helping Corrigan learn and grow.

Does your family have wonderful therapists?  If you have ever had one that just didn’t “click” with your child (or family) then you understand what a blessing it is to have someone that fits so well into your child’s life.  Tell me about your child’s therapists…I’d love to know what makes them amazing!

*update: Corrigan woke today in a wonderful mood, is initiating touch (wanting to be picked up and held-which he avoids when under the “fog”) and is making good eye contact.  He signed the word “help” for the first time this morning, after I used it during a tantrum over something that he dropped, and has been pretty sweet-natured and “normal.”

Taking Amy’s advice I looked at his diet.  Yesterday ( 2pmWeds- 2pmThurs) he only had his allotted protein and not the extra gram. The day before (2pm Tues-2pm Weds) he had an extra half gram of protein. However, the two days at the start of the week (2pm-Sun-2pm Mon and 2pm Mon-2pm Tues)  he had his allotted amount plus the extra gram.  Yesterday was an extremely “off” day but today he is much improved.

Also interesting, judging by how little he ate of his solids last night, and how I am having a hard time getting him to finish his formula today, I would not give him the extra gram again today. That would mean that he would have 2 consecutive days of extra protein, one day of half-extra and then two days of only regularly scheduled amount. If theory holds, then tomorrow should be his best day of the week, the fog might be the most lifted, but then I know that he is going to have to get the extra gram tomorrow (2pm friday-2pm Saturday) because I cannot take the chance that he begin to catabolize.

Which would then mean that by Monday, the fog might be back because of the increased protein over the weekend.

Fascinating to see if this holds true.

Thank you Amy for the advice!

I love this stuff…charting stuff and exploring theories. Makes me feel useful.

7 thoughts on “Therapy (and some rambling thoughts) *update at bottom*

  1. I believe in the fog. Granted Jonathan was 9 months old when he was transplanted, but I always describe the month or so post transplant as if a fog was lifted from his mind. Since you keep track, can you correlate the extra gram of protein to his not so good days? I would guess his bad days fall either 1-2 days after a good day. Possibly last 1-2 days before he has another good day. Just a guess – but if it is the extra protein, it makes sense it might build for a day or two, make him feel bad, he then intakes less, he feels better. Repeat. Just a thought. Jonathan started speech therapy with Miss Jenna when he was about 18 months. He had weekly visits with her for 3 years and I credit her in making him a verbal child. She was awesome. When David is ready – I will take him to her. She’s the only one I want ;D

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  2. We loved/love all of our therapists…some had/have a closer tie to the kids because they connect with them in a gentle way – never forcing their learning. The guide them, not push them, they support them not force them. Therapists are amazing! Q’s PT that she saw for nearly 6 years (and stopped 3 yrs ago) was so special Q still talks about her and wants to see her again!

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  3. I loved reading this post. It really does sound like he is making steps in the right direction. I didn’t know food therapy existed but do you know that one of Nathan’s favorite things to do is pretend to eat toy food? Loves toy tomatoes, corn, peas, etc. and always says “mmmmm, I eating mama, it good”. Why can’t he do the same to the real food? What does his therapist work on in relation to food? I would love to know!!

    (The more you write, the more I feel like our kids are the same, sames position, different diseases)

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  4. Christina,
    Our “food therapist” is an oromotor/oral motor therapist who works with Corrigan to get him to try new foods, experience and tolerate new textures and feel “safe” with the feeling of eating.

    Though over time I think I am realizing that Corrigan probably does not have true oral aversions to food/eating but that the chemical imbalance, caused by his disorder, has nearly eliminated the cues for hunger. Since he doesn’t get cues to be hungry and therefore doesn’t eat I think that his issues with food texture, temperature, volume, chewing etc come from more of a lack of practice than aversion.

    However, his feeding therapist continues to support us on a monthly basis on things that involve oral skills simply because those skills coincide with learning speech. So she works on things like blowing, sucking, tongue rolling/silly sounds and songs etc.

    She has a really good knowledge of nutrition so she is a HUGE support to me personally when I am struggling on how to get Corrigan’s caloric needs met while being so incredibly restricted by his protein intake. She comes up with some really creative ways to try and get him to try new foods, understands that he is very immature in his chewing skills so we figure out ways to present it to him, and is just a really great resource on tube feeding stuff too.

    I would be sad if we didn’t have Miss Michelle-she brings a lot to the plate and has helped to improve things like how to sit at the table during mealtime, how to not freak out in the highchair (when he was younger) and how to try different meal schedules to capitalize on what little hunger cycles he has.

    She rocks.

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  6. Thank you, I have pretty much given up forcing him to sit at the dinner table. The screaming and tantrums led to coughing and vomiting. I don’t want to push him farther away from food and eating.

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  7. Ugh! I can’t imagine how heavy a weight it must be to manage such a delicate diet. Hugs!!!!

    I totally get what you are saying about the fog. I know it is tough. Abbey has the fog a lot also. We chalk it up to Sensory Integration Disorder. A lot of Corigan’s behavior meets the description of a child with sensory issues. I still wonder about reflux being a culprit for the little guy at night considering he was up with hiccups.

    I want to brag about our fave therapist. Abbey’s (age 19 mos) OT has been seeing her since she was 5 old and she has been such a support for us. During OT last week, we had a breakthrough with eating. Abbey started tasting foods for the first time in 15 months!! So, we are so excited. She still is not consuming any foods but tasting everything she can. She even stole some lettuce off her brother’s plate last night and was carrying it around tasting it.

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