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[Guest guest]

Hi everyone:

Well, we spent the whole day in Baltimore today at the Kennedy Kreiger

Institute. We saw Dr. Hoon a neurodevelopmental specialist in the morning and

the Feeding Disorders Clinic in the afternoon. It was a very long day. I

left my house at 9:15 this morning and did not get home until almost 7pm. It

is a 2 hour drive each way and as you all come to expect Clayton cried most of

the way there and most of the way home - I have a splitting headache. Now for

what the doctors said:

Dr. Hoon said that Clayton has a minor neuromotor abnormality, tremors (this

was new to us) a large speech delay and what appears to be some type of

processing issues. He did indicate that it is his opinion that Clayton's

small size, (head -- less than 2%) weight and height (5% or less) and small

feet, hands, features are all related. He thinks that all of his issues are

actually related (except for maybe the allergies) but then made the comment

that we may not have the ability to determine what is wrong with him in 1998.

BUT IT KEEPS COMING BACK TO A QUESTION OF A METABOLIC ISSUE. He even brought

in Dr. a metabolic specialist to review Clayton's records and once again

they now think that it may be something metabolic due to the questionable

blood results Clayton has had (Continually high Alanine levels -- higher with

each test, and elevated lactic acid level and carinitne level at the lowest

normal level and other abnormal amino acids). Now they want to run all these

tests again under controlled circumstances; They are (1) blood for lactate

and amino acids 4-6 hours after eating; (2) random urine sample in afternoon 2

hours after lunch; (3) urine 12-16 hours after fasting (they will turn his

tube feeds off one night). Anyone know why they want to do it this way.

Again the metabolic issue came up because it seems to fit Clayton's course he

said -- also due to the fact that when he gets sick he gets really sick and

loses skills. At least this was the first doctor who seemed to think that

everything was all related (like I do) and that it was something maybe even

CLAYTON SYNDROME. It was also interesting to notice that Clayton was still

very light sensitive and would not track the light.

As for the Feeding and swallowing clinic we saw the GI (Dr. Katz) and

nutritionist, a behavioral psychologist (Dr. Severn). The definitely want to

admit Clayton into the feeding clinic for 6-8 weeks. They feel it will help.

They do not think that they will get him off tube feeds completely due to the

fact that they are not sure how well he will tolerate the food and be able to

digest it, absorb it or use it. Even if he can get 10-50% of his calories by

mouth I will be happy. They also want to due the following when he is in-

patient _(1) swallowing study with an OT and behavioral psych; (2) rectal

biopsy (due to the lingering pooping issue). I also plan to ask them to due

another gastric emptying study to see if a pyloraplsty is warranted at this

time.

All in all it was a good day just long and still no diagnosis -- but maybe we

are getting closer. I did find it interesting that this doctor asked if I had

a genetic screening done and I said I had an amnio. He said that they are not

100% accurate. He said that at this time a lot of things have been ruled out

(more common) and now he is looking at rarer things and trying to rule them

out (although he would not mention anything specific). At least I feel I am

making some progress.

Thanks for reading if you have made it this far.

Love,

Sharon

mommy to Jake (5) and fraternal twins (34.5 weeks) (3/30/97) - Cole -(nda)

and Clayton (eosinophilic gastroenteritis, food allergies (milk, soy, eggs,

wheat), g-tube, Nissen and possible latex allergy, some DD, undiagnosed neuro

issues and sensory integration disorder)