Cameron hyper ige severe eczema

I DO NOT own this song... "Song: Joe Satriani- I Believe"
My son is 4 years old and he has-Hyper IGE , XXXY syndrome, Spastic Hemiplegia Cerebral Palsy, brain lesions and pneumatoceles. severe eczema

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Nonprofits & Activism

Tags:

• Hyper
• IGE
• cerebral
• palsy
• brain
• lesions
• severe
• eczema
• asthma
• pneumatoceles
• XXXY
• joe
• satriani
• believe

[AmyTx]

HI thanks for the well wishes for cameron.. We are in the dallas fort worth area of Texas.. we see a great dermatologist in dallas and an awesome immunologist..love to hear stories and compare too

[cwzuber]

Seems to me from the post I've read, I'm in Arlington.Tx family is from east Texas. Maybe we can compare notes also. God bless and take care

[cwzuber]

My bro is 45 and just found out two weeks ago that he has job syndrome. I'm cliff his twin and I'm being tested Nov28 th for job. As I write this post, I'm very ill myself,miss a lot of work and pray one day I would get better. If u wish,we can discuss this matter. Only 250 people out of 7 billion has this rare disease.

[AmyTx]

@alfieboy34 he is actually doing alot better i pray he's outgrowing some of this.. we just got him out of the icu 2 weeks ago with respiratory distress but the meds he is on know has helped improve his skin too.. thank you

[DrMojo32]

thanks for sharing!!

[jillofalltrades1]

Thank you so much for posting this video. My son has some form of Hyper IgE and we can so relate to what Cameron is going through. It has been very difficult finding doctors that can help him. We pray that you can find some comfort for Cameron and that you can appreciate each and every day. Thanks again!

[jasobal]

She has an amazing pediatrician that has done more than I could ever repay. Everyone has so little knowledge of the disorder that they are not sure where to send us next. I found a case study on-line that talked about using Chemo drugs as a suppresive agent for the IgE but we are so scared of the side effects. Cameron is a beautiful boy and I see Emi in his eyes. I am not familiar with U-tube at all and my husband got this account just to speak with you. Do you do Facebook or e-mail?

[jasobal]

Hi Amy, my name is Katie and my husband Jason told me that he wrote you yesterday. This is all so new to us that I stuggle with who to talk to or where to go. Emi will be three on August 5th and has good weeks and bad weeks. Like my husband said it looks as if Cameron has a harder stuggle than Emi. She came to us with (MRSA) lesions from head to waist but it has never gone down her legs. She is allergic to Dairy, Eggs, Wheat, Soy, Oats, Legumes, Peanuts, Pine Nuts, Strawberries.

[jasobal]

My daughters levels were over 20000 when we got her. We are now down to 10700. I meant to write that earlier.

[jasobal]

My wife and I have adpoted a 2 yr old from Belize with Hyper IgE. We are told it is a milder version. Life is very difficult to say the least, but we are steadily studying for treatments..We are in Longview, TX. I see TX by your name. Are you in TX too? Would love to compare notes/thoughts.