/Gareth update- Ig G infusions

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<<Adverse Affects:

Skin atrophy,Striae , Acneform lesions, Pigmentation changes, HPA suppression (with higher potency used >2 wk) >>

Hi, Everyone........above are the adverse affects to that med, as listed on Medscape's drug site. They told me that Gareth was on such a low dose of Fludrocort, 0.1 mg, that there would be no side affects to be concerned about. BUT....if one is allergic to steroids or highly sensitive to them, then it would make sense to me, that they would be adversely affected by them, no matter how low the dosage. I don't know.....I'm weaning him off the Fludrocort and see if the behaviors improve. Right now, he's up throughout the night, scared stiff and one of us is always in the other twin bed, sleeping in his room, just to settle him down when he freaks out. He's also lashing out during the day, so angry, and I have lost track of the number of times I've been slugged over the past several months......always attributing it to something else.

We had good news and bad news from Gareth's recent blood work. The good news was that his Ig G gammaglobulin levels have gotten into the normal ranges for 1 - 4. The bad news is that his WBC has dropped from 7.8 (Nov) to 2.5 (March 2) and his lymphs are in the high range. Of course, there's lots of possibilities as to why, and we're scheduled to see a new doc, Hematologist, on March 19. I feel like I'm fixing up an antique car.....get one part replaced & working fine and another gives out!!! Geeeesssshhh!!!

Take care, Everyone.

Margaret

Mom to Gareth, 23 y/o, DS/ASD/OCD

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has times when he 'grabs'...usually out of fear (because he is afraid

of BM's mostly..and that causes other problems).

Anyway, we had been giving him TMG. I heard would help, possibly, with the way

he hits everything...the wall, the tabletop, the door..well, anything. It must

have helped, because when we ran out and didn't have the money to purchase more,

he became very upset. Did you think a kiddo could sit on the floor, next to the

wall, and hit the back of his head so hard that it would put a 5 " x8 " hole in the

sheetrock? Shocked me... We now have TMG and his hitting has pretty much gone

away.

Ben also won't sleep at night...(his favorite time to need to go to the

bathroom). He yells and throws things (including furniture) all night,

sometimes. It gets very tiring. We had a script for clonadine that really was

not too effective, even though we continued with the melatonin and " relax and

sleep " (valarian root sleep aid). I found that another additive

helps...lavender oil applied to the bottom of his feet. It usually does the

trick within 20 min. I'll send you some, if you want to try it out.

I KNOW how tired we parents can get....ha ha