Re: Update on

[Guest guest]

Dear Tina,

Have you tried Mt. Sinai in N.Y. with a Dr. Charlotte Cunningham-Rundles? Lee

[Guest guest]

Tina,

Could you tell me what dose of IVIG was on when

he took it by IV? I have noticed that some docs are giving much

higher grams than others. My son is 12 and CVID with Shwachman's

Syndrome as a diagnosis. His levels are quite low and yet he doesn't

take thes massive doses. We don't have problems with side effects

and he is much healthier with IVIG than without. I was just wondering

about it. I'm so sorry for 's problems and hope you get this

figured out really soon. Is he sick all the time without gammaglobulin?

We started homeschooling this year. He is in 6th grade.

Jan

IBSNICK1@... wrote:

> Dear list:

> I have not been posting in some time. Maybe some of you might remember me.

> For several months into the new year I was without a computer (my old one

> stopped working) and we have since been wrapped up in one problem after

> another. I try to pick up emails when I can, though most of the time I play

> catch up only to wind up in another situation at home.

> My youngest child is 14. He has CVID, asthma, Juvenile Arthritis,

> and Fibromyalgia. My middle child also has juvenile arthritis, and my oldest

> is almost 18 and is critically ill with a rare seizure disorder called the

> Lennox Gastaut Syndrome. She can have up to 200 seizures a day on a bad day.

> Last year was exposed to Mono. He wound up with Epstein Barr Virus -

> very badly to the point he could not function in school. He missed the

> latter part of the school year last year. To date he still can not function

> on a full day in school now 1 year later. The fatigue is terrible still !!!

> In addition to that, Mike's IVIG has always caused terrible side effects in

> that he literally missed 1 week of school a month after each infusion. He

> gets severe fatigue, terrible blinding headaches, flu like symptoms, etc. We

> have tried all the different products and are currently on Gamimune N and

> this produces the least amount of side effects. Some of the others caused

> nausea, projectile vomiting once even aseptic meningitis. We were doing the

> infusions over 10 to 12 hours and even that minimized the reactions a little.

> We have tried IV Benadryl, IV Solumedrol, various different pain

> medications, diamox, duragesic patches, even prednisone by mouth for 5 days

> after. Now after 2 years of a real struggle, we were able to try a clisis

> infusion. That is the gamma given subcutaneously (under the skin) instead of

> in a vein it goes into the fatty tissue usually done in the stomach or thigh.

> The doctors were almost POSITIVE that this would alleviate all headaches and

> side effects and give a more normal life. The absorption rate is so

> slow that they have proven cases where there are no side effects at all! So

> after 2 years of fighting with the insurance companies, home infusion

> companies, we tried the clisis FINALLY!!!! Unfortunately, we have had 3 of

> these treatments now and is the ONLY one the doctors have ever heard

> of that have had even worse side effects. The headaches are not as bad, but

> because the absorption rate is so slow that he has one continuous headache

> that won't go away at all. It has lasted from one infusion to the next. We

> are so frustrated now we are beside ourselves. Mike is talking about how

> when he gets older he might want to stop the infusions altogether because he

> could never function like this as an adult. There must be SOMETHING we can

> do to help this boy. He is getting very depressed now and I am so concerned

> about him. Is there anyone out there who has had some experience with severe

> headaches and had something or some medication that has helped. I am also

> thinking of seeking a second opinion and wonder if there are any immune

> centers that could be recommended. I live in New Jersey but would travel

> ANYWHERE to get this situation resolved.

> Thanks for any input

> Tina

>

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> This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

[Guest guest]

So sorry about . I will be praying for him! Hope you are able to find

the answers that you need to help him. Believe me, I know how hard that is

and how frustrating!

Diane, Mom to Kody age 4, IgG def., steroid dependent asthma, and unknown

def.!

[Guest guest]

Dear Tina,

I can sure sympathize with you. My son is 11 years old and we have battled

vomiting and migraine headaches as well. We were using a protocol of

prednisone 20 mg 3 days prior and 2 days post infusion. Jake would also

receive IV Solumedrol and Benadryl po for a day during infusion. This worked

for us. However, Jake has developed scoliosis and we had to take him off all

steroids. He now gets IV Benadryl before and during the infusion. He comes

home on extra fluids (IV) and he gets IV Benadryl for 48 hs post infusion.

He still gets the headaches so we dose him with 30 mg of Torodal IV and this

time we gave him 25 mg Phenergan po. He woke up the next day with a slight

headache so he took 10 mg Torodal po and 25 mg Phenergan po. This does the

trick for him. It took us years to find a solution to this problem. So

don't give up. Jake had EBV last year too. I decided to keep him home and

school him myself this year. It has done him a world of good. He too became

very depressed when he had the EBV so they decided to give him some meds to

help. He is taking BuSpar and Prozac for his depression. This has really

worked. He is a much happier human. Best of luck.

Sue W Mom to Jake (11) and (7)

[Guest guest]

That's great news! I'll take all the baby steps that I can if it's taking me in the right direction...... Hoping you've got a "self-resolver" on your hands!!!! - Noelle's mommy, 2 1/2 years old and in 8th cast from Rochester NY, reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

Subject: Update on To: infantile_scoliosis Date: Thursday, September 3, 2009, 4:15 AM

Our appointment at the Denver CH went good last week. I think...We brought our x-ray from July 9, which the DCH doc estimated to be in the 20* range. I told him we were given two numbers- 13 top, 28 bottom, little rotation. He agreed there was little rotation and encouraged us to 'wait and see'. Knowing what I know (thank you, everyone), I was insistent on another x-ray, which he readily agreed to do. He measured this one at 19*. I feel like her back is not as noticeably curved now as it used to be, so I was hoping to see a lower number, but I'm happy it did come down. He also agreed she appears to have decreased muscle tone(hypotonia? ), but said it was common with IS and nothing that seemed extreme. She'll be 6 months in a few days- nowhere near sitting, rarely puts weight on her legs, and doesn't really reach for toys or anything. I'm anxious for her 6 month check-up with our local pediatrician, this Friday. We've also

forwarded SLC Shriners the x-ray from 8/28 and a chest x-ray that was taken hours after birth that we forgot about. We canceled our appointment with them later this month- hopefully someone got to jump in that spot!I do have one concern re: the doc saying he was trained by Mehta herself, indicates he only does Mehta casts, and has the AMIL table. , if you're reading this, can you give me a call? Thanks!