c diff and other stuff to other people

[Guest guest]

Macey has never had c-diff. She has been on prophylactic antibiotics for 1

yr (as of next month). Before that she was on 30 day cycles of Cefzil and

several IV treatments of Rocephin for sinusitis. She did have the bacterial

overgrowth early on. After that we started the acidophilus. Maybe that has

helped. Macey's IgA numbers have also improved so since IgA is in the

stomach lining that might explain something. maybe...

Macey isn't chilled when she eats but is. And although isn't a

PID child she is petite and a small % for her age. The chill may come from

the fact that most of the PID children are small in stature and have less

body weight. Thus have problems with body heat.

Macey was on Luvonox (OCD med) as a trial last year. She had several

symptoms of the disorder but really didn't have the thought process capable

of the obsessive part. Plus she had alot of ADHD symptoms. The medicine

did no good and soon after she coincidentally started OT therapy. That's

where she was diagnosed with Sensory Integration Dysfunction.

Macey has the eczema too. She's always had it on her upper arms and upper

legs. Then around 11 months old came down with a bad case on her face that

lasted for months. This month we're having problems with upper trunk and

rear end. Somehow I thought it would get better in that area once we got

her out of the diapers. We use Elocon cream, extra doses of Atarax and

sometimes Prednisolone (or Prelone). She also has problems with hives. or

uticaria, depending on which doc you ask. I can't seem to tell the

difference between the two conditions.

Sue G - special prayers for your husband and I hope everyone keeps safe

during this twisted time in American history.

Sandy - my prayers are with your family and I hope that things begin to come

together soon. Whether it be transplant or new treatment I know that where

there's a will there's a way. Please let us know when you're scheduled to

go for the BMA (Bone marrow aspirate).

Autumn - glad you made it safely home and I hope mark's getting back up to

speed. Good luck with your meeting with 's doc Monday. Regarding

Mark's headaches, did they see the inflammation on the MRI or is it a

symptomatic diagnosis? Macey has complained of headaches for up to 2 yrs

now and the ENT/opthmalogist still can't say it's related to their area of

expertise. We've put off a neuro consult. She hasn't had one since

November. She has had about 4 a year. really bad, debilitating and

accompanied by a rhythmic rocking motion for hours afterwards. Hope Mark's

spots have resolved and he escaped the chicken pox.

Amber - macey has selective antibody deficiency. which means she didn't

respond to some of the pneumovax titers that were tested on her. I'm not

sure what " free floating " is. And the humoral immune deficiency is related

to what type of cell deficiency it is. Humoral immunity is your B-cells.

Cellular immunity are the t-cells. So I would say he is basically calling

it a b-cell deficiency. Macey's b-cells worked fine on the phage study she

had but she still gets illnesses that are b-cell related. she's a strange

bird.

Annette - Sorry to hear that Alissa is ill again. I hope things resolve

soon and I'm sending you tons of support and cyber-hugs.

Helen - I'm so glad things are starting to come together for Matt. Any

reoccurrence of the " S " bacteria. I hate to say the name for fear it will

rear it's ugly head. Hope everything continues to go well.

- hears my opinion about the Tylenol. Our kids systems are so out

of kilter that one minute they may have a slight temp (for which we are

grateful because that of course means their mounting some type of response)

but the next minute their system may not know how to evenly fight the

bacteria and it will turn on itself. Thus causing a spike in fever or a

drastic crash in temp (hypothermia actually). The spike can bring on

febrile seizures and the drop can bring on lethargy. Either way it's a

no-win situation. We use to not medicate, and I was the first one to cheer

for some type of heat generated to fight the nasties off. But when Macey

went from 100 to 104 then 105 then 106 within an hour and had four febrile

seizure within 24 I changed my tune. now granted the fever was from sepsis

but that's really not a rare occurrence in PID patients and once that temp

gets to going you better hope that the Tylenol or Advil can catch up. It

can easily get ahead of you. We also use Tylenol suppositories. they tend

to work better and with Macey's GI history I'm not always sure the Tylenol

is getting where it should as quickly as it could. If Zach's doc is

convinced he has it then I say treat. The only sure way to diagnose it in

an IVIG patient is by a Urea 14 breath test or by endoscopy. Neither is

cheap. It is though a triple cocktail of antibiotics and if Zach's had

problems responding to oral antibiotics before you may need to look at other

options. The CDC did a study several years ago on children with HP. a

good site is Dr. Marshall's (the founder of the hpylori bacteria and leading

authority on it) http://www.hpylori.com/ Macey sees a Dr. Myers at Duke.

She saw Dr. the two times last year. watch the Prilosec it can

majorly mess with his stomach. had hp when she was 4 and they gave

her erythromycin and pepto bismol because they thought the Prilosec would be

harmful. survey is forthcoming.

- 's mom - the pumpkins are at

http://netpage.org/PedPID/pumpkins.htm . send the pic to me ...... thanks

Ursula Holleman

Macey's mom (4 yr. old with CVID, asthma, GERD, sinus disease, grade I left

kidney reflux, Sensory Integration Disorder)

ICQ # 28592349

http://www.icq.com

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