SCARED-please help, 3 year old asthma out of control?

[BYHOPE1113]

Good for you!

What ever it is causing Melanie's health problems, once you get a firm diagnosis, the doctors will know better how to treat her. Good Luck and let us know how it goes.

Hugs,


Kim

[babiespalace]

Melanie sees the pulomologist in march. they must be really busy. At least she isn't having any wheezing episodes right now. Also she sees the ENt in 2 weeks. I'll keep you guys updated. Thank yo so so so much. You guys are the best.

[matt's mom]

HI everyone,

I am Matt's Mom. I have been reading through this thread and everyone's life sounds like mine. My son is seven. He has had his tonsil's out and adnoids and one sinus surgery. We are gearing up for another one. He has severe asthma and has tested positive for m470v polymorphism. Some doctors acknowledge this and others don't. I feel so helpless and every time my son coughs and wheezes I get a knot in my stomach like I wish there was something else I could do for him. He is currently on Flovent, rhinocort, singular and xopenex. Last flair up they added atrovent and dexa methosone. He also has cushings syndrome due to all the steriods. Now they want to test his insulin levels. I almost wishe they could help me with something. He has frequent acid reflux as well. Does anyone find a particular climate better than others?

Thank you so much. Just by reading your thread I feel like I am not alone.

Matt's Mom

[BYHOPE1113]

Hi Matt's Mom,

I'm glad you found the thread ok and I have tell you I'm as interested in your experiences as you are ours. This battle has been tough, but it has gotten better with time, at least in our case. The only problem is it doesn't seem to end, just when things get better, it rears its ugly head again.

I just pulled out Karly's Genetic testing and here's what it says:

Mutations: No Reported Mutions detected
Novel Variations: No Novel Variations Detected
Polymorphisms: M470V/M470V
7T/7T variant

The way our doctor described this is she doesn't have Cystic Fibrosis, however she might exibit some of the same health problems that people with CF commonly experience (but milder) because of the two polymorphisms M470V (one inherited from me, the other from her father) Like chronic sinusitis and respiratory problems.

As for climates: I live in East Texas and we obviously still have problems, but the cold weather really seems to affect her asthma, and Texas really doesn't have that cold of weather compared to the northern states.

If you happen to live in Nebraska, I can attest that they have an outstanding CF/Asthma specialist, Dr. Bettina Hilman. Karly was BAD< BAD until we found her and she started testing and trying to find out what was going on.

And your right about alot of doctor's not knowing about M470V, they don't. I know more about it than most of Karly's doctors. Fortunately Dr. Hilman had a degree in Genetics so she knew what to look for. I understand the research on M470V is limited. There is a doctor at John Hopkins university that has studied it, you might find it interesting to email him about your son.

Believe it or not, he's liable to answer you. He did me. Basically, he told me there was alot more studies that needed to be done, but if you ask, he might can guide you in the right direction for your son. His name is Dr. Garry Cutting. It can't hurt.

Check in with us ever so often and let us know how you all are doing. And please feel free to ask any questions you like. It's nice to chat with people going thru the same things.

[matt's mom]

Hi

Matt has basically been sick since he was six months old. They told me to get his tonsils out and he would be better. He was three at the time but it never ended. He has had sinus surgery and twenty million blood tests- nothing ever showed up. He was diagnosed with a pnuemococal immune deficiency last May and got a pnuemovax vaccine. The pnumonias- 5 a year have gotten better. He has GERD, chronic sinusitis and is always tired. He has cushings syndrome and is ALWAYS sick. I feel as if I am on this constant mission to find help for him. He was finally tested for Cf which came out negative but he did have three positive polymorphisims. I started doing my own research and found that m470v in 7t can mimic cf. I thought there must be others out there with this mutation. They may also want to test hime for immotile cilia syndrome. I am trying to find out more about this variant cf and if others are treated as cf patients. I am also wondering if these children get accomodations at school. If so, what do the parents ask for. Today my son is walking to a nursing home from school as a Valentine project. We live in New York so it is cold and windy. I am a nervous wreck praying he is okay. He wanted to go with his class so I let him go.

If anyone has any suggestions, advice etc.. It would be much appreciated.

Thanks- Matt's Mom