New Member -

[Guest guest]

Hi ! And thank you for the warm welcome.My daughter is almost 13 and

had a serious bout with 4 different parasites several years ago.two

of which cost her a stomoach biopsy,intestine biopsy,colonoscopy,and

an appendectomy when one of the little critters crawled in there and

grew like a monster.she was diagnosed then with Iga

deficiency...After many many test her levels appeared to have risen

to a more tolerable level and we were told that she was " cured "

famous last words from Drs. who don't understand.Recently she had a

serious stomach infection..then developed vaginal cellulitis...Not a

pleasent thing at all ! She has also started having asthma

attacks,IBS,stomach cramps,sinusitis,and a spastic colon.The new dr.

(we had moved across the country since her illness began) decided

that another blood series should be done (DUH !!I had been telling

them for 4 months that she was IgA deficient!!) Since she had been

realitivly healthy for 2 years they had thought that she couldn't

possibly be having Iga problems again.Well they found out

otherwise.And so now she is starting down that road of blood

test,blood test,and more blood test.When she was first diagnosed I

knew very little about Iga...Now I keep saying if I only knew then

what I know now..which still isn't a whole lot,That is why I am so

happy to have found this group !!:-)She is my second of 4 children..I

have a 15 year old who is normally healthy until he got into a fight

with an ATV at Christmas and lost.He suffered a double compound

fracture of one leg and nearly severed the other,he is now homebound

with a teacher and just now out of his wheelchair and up on

crutches.My other 2 are almost 11 and 9 and have been handling all of

this health stuff with their siblings like troopers.I have looked for

and printed out everything I could find on Iga and am trying very to

become as informed as possible before she sees the immunologist..I am

looking forward to getting to know all of you and hope to not only

learn from you but help you as well...Sorry so long!

[Guest guest]

Welcome, . I have 2 boys with Shwachman-Diamond Syndrome (one also) is

deficient in total IgG, IgG subclass 1 and IgM

My boys will be getting their first IVIG infusion on Wednesday.

Welcome to he group,

~Peace Be With You~

Pattie

**Jesus, I want to know you more deeply this year. Let my life become a shining

witness to those around me that you are the Son of God, the King, and the

Messiah.**

[Guest guest]

Hi ,

My name is Sandi, I have an almost ten year old son named . He has a

congenital heart defect (Tetrology of Fallot), Primary Immune Deficiency,

asthma, GERD, severe allergies, chronic sinusitis and chronic ear infections.

I also have a 22 year old daughter.

My son is tutored at home for now so we are quite busy. Welcome to the

group, this is an excellent place for support and great laughs. These women

are awesome.

Sandi

[Guest guest]

Hi ,

You didn't mention what type of school/class your daughter is in. Is she in

public school? She needs to be in a special program for children with

disabilities. Some might disagree with that, but it seems she needs much

smaller

class sizes, etc. right now. She also needs Sensory Integration Therapy right

away. The school should offer some SI. It is time to think of her not as a

destructive child, but as a child with a disability. She may be bright, but

many

with autism are! I am glad you came to this list. It is a great source of

information!

[Guest guest]

Greetings all:I recently had a diagnosis of hyperaldosteronism confirmed, and wanted to share a little and ask for advice. I've had hypertension for about 14 years. It kept getting worse, and I kept changing and adding medications. In early 2009 my family Doc had previously tested and found I had low K, and put me on a supplement. Later in 2009 I went to an endocrinologist, mainly for help with blood glucose control. The Endo was more concerned with my BP, as he thought is was more likely to kill me than the high blood glucose. He had a blood test for aldosterone (and I presume rennin) done. The results came back showing high aldosterone. (I don't have the test results). He had me start on sprionolactone, which did reduce my BP. He also suggested doing a follow up 24 hour urine test as the next step. Shortly after that I lost my job and was out of work for the better part of a year, with some, but not good health insurance, and a very tight budget. I eventually moved (from Nevada to Pennsylvania) to take a new job in April of last year, with insurance starting in July. I found a new family doc, and got a referral to a new Endo. The New Endo had the 24-hour urine test run, along with other blood work, and confirmed the hyperaldosteronism. (I do not have the lab results available, but will attempt to get the results). Last month I had a CT scan which showed two adnomas on my left adrenal gland, one 1 cm and one 1.3 cm. My right adrenal gland was clear. When I met with the Endo to review the CT results, he told me that I needed to have my left adrenal gland removed, and referred me to a surgeon. I had studied up a bit and asked about AVS, and he stated that he did not think it was necessary, but I surgeon would review my history and could make a recommendation. Today I met with the surgeon. He is fairly experienced with adrenalectomy's and primarily does laproscopic surgery. I asked about AVS and expressed concern with removing the "right" gland. The surgeon was against me having the AVS, and did not think it was necessary. He did state th at he was basin this on the Endo's findings. He did recommended an MRI for further evaluation. Based on some of the other "cases" I've read about here and a more online research, I'm not sure if I want to proceed with surgery without the AVS. As best I can tell the current guidelines for someone over 40 with an identified adnoma is to have the AVS to be certain. I'm also concerned that my Endo is not well educated in hyperthyroidism as he may think he is. Unfortunately endo options where I live are limited. I have not discussed the potential surgery with my insurance company yet, So I don't know what their position will be regarding any additional testing. Thanks for reading, I would apreciate any comments. Regards,Mike My Background:Male, 51 years old, 6'3" tall, 295 lbs.Conditions: Hypertension, Diabetes Type II, Obstructive Sleep ApneaAverage PB: 140/90, highs to 160/100, occasional low to 130/75Medications:Coreg CR 40 mgDiovan 320 mg Amlopidine 5 mgLisinopril 40 mgSprionolactone 25 mgasprin 325 mgJanumet 50/1000 mg x2Novolog 70/30 60 units x2