Need Help - At wits end!

[familyof4]

I'll try to keep this as short as possible but give enough details. My son is 5. He has had digestive issues since birth and is currently diagnosed with Pancreatic Insufficiency (must take perscription digestive enzymes - on almost total enzyme replacement), Cyclic Vomiting Syndrome, Celiacs (docs not 100% sure of this but older sister has it so he is on a gluten free diet), frequent sinus infections as a toddler, and has always displayed balance issues but has great gross motor skills and hand eye coordination.

 

Last November he developed a rapid eye blink facial tic. Ped. Neuro said this was not a transitional tic and would not go away, he might get more tics, and would likely worsen during puberty. 3 weeks Prior to developing the tic he quit sucking his thumb cold turkey - said it didn't taste good, this was followed by tantrums that were out of character for him and things that weren't tantrum worthy. The tic was very pronounced to the point I had complete strangers stopping me and asking if he was okay. He also was doing this frequent nose wiping thing that we suspected was a tic. During this time my usually cuddly child was also seemingly always in motion / couldn't sit still or cuddle.

 

Ped. Neuro commented that normally he can see tics in the parents that they didn't know they had but in our case he was not picking up on any. I do believe my Aunt and my Grandmother have tics.

 

We took a trip early in December and by the end of the trip - Disneyland - the tic was all but gone and he was sucking his thumb again. He tics so rarely that we were questioning if it the tic was totally absent although the pediatrician still sees it, no one else would notice. Don't know if the whole thumb thing has anything to do with it.

 

This spring his GI issues have been horrible and he has had to take more of his abortive med - Zofran. He developed an issue with frequent urination only at night and we were able to tie it to the zofran as a known side affect is urinary retention and we only saw the problem within a day of having to take the med.

 

Well, since last friday he has had to urinate every 5 minutes during the day and he seems to be back to the can't stand still/sit still although the eye blink is seen very very infrequently. Unlike the nighttime urination problem he had before - he is not going very much each time he goes but seems to have this overwhelming urge that he has to and can't hold it. He hasn't had zofran for days prior to this developing

 

I have been sick and am taking antibiotics for a sinius infection - I wondered if I might have had strep but couldn't get urgent care to do a strep test on me this weekend - just gave me the meds for the sinus infection that are of the right class to also take care of strep.

 

To my knowledge he has never had strep. I took him to his pediatrician today and his throat is red and he does have a slightly swollen gland but the rapid test was negative, of course his urine was negative for infection as well. He has had tons of labs, tests, and blood work over the last couple months for his other issues - all which came back normal. The pediatrician decided to wait to see if his culture grows anything before drawing blood for a titer test. She has seen one case of PANDAS years ago and isn't dismissing it as a possibility.

 

Since it looks like we will be sticking him can anyone suggest other parameters that should be tested at the same time or anything else I should be pursuing/reading?

 

This poor kid has been through so much I would just like to have some answers / solutions for him. If this urination problem keeps up I don't know how he will attend kindergarten in the fall - He attended pre-school last year and did wonderfully.

 

Thanks for taking the time to read and respond

 

Heather

[peglem]

Yeast problems always make my daughter hyperactive (and often giggly) and also increases urination. I don't believe there is a real test for yeast overgrowth (some people swear by the spit in water test, but I can't get my child to spit) because candida yeast is normally found in the intestinal tract. I wonder if it would help to try an antifungal (there are natural antifungals). I just don't know, with your son's gastro problems if that would be okay or not. My daughter is on nystatin, a prescription antifungal, but she's also on prophilactic antibiotics so its a real balancing act.

 

My daughter's streppy behaviors are mostly OCD issues, with tantrumming type behavior over things that she keeps repeating and can't stop...like playing a certain song over and over, even though it is the source of her upset. Or spinning something...she'll just keep doing it over and over, even though it is upsetting her, until I make it stop. Then she'll work through the tantrum and get over it.

 

My daughter has had a lot of rapid strep tests, some of which came out negative when I KNOW she has strep (even though she is asymptomatic, I can tell from the behavior). I've never had the culture from a negative rapid strep come out positive...but I think sometimes the person who does the swab isn't getting a good enough sample. AND my daughter's strep titers have never been particularly high (in fact sometimes they've been below normal range), even when we've had tons of documented positive throat swabs. I believe my daughter's immune system is not responding well to fight the strep and her behavioral symptoms are the result of toxins produced by the strep.