Diagnosed Today!

[1tiredmama]

My husband and I cried right there in front of the doctor today when we got the diagnosis--an answer for ds17 who has been getting progressively worse since the age of 4. Once a fairly typical, healthy child,he barely functions now, can't go to school, or learn to drive, or think clearly, or eat without feeling nauseous most meals. It's been so hard to watch helplessly all these years.

 

Dr. L. said that he was one of the most complicated cases she's seen, and I thought that meant that she couldn't help him (because other doctors have said the same, and left it at that.) I was so scared. But, then she came out with the dx and said there is treatment. I was overjoyed. But, also, I was sad for the years of pain and suffering ds and the family have gone through. Why couldn't one of the many specialists we consulted over the years just listen to me and take the time to look for an answer for my child???

 

So, we left with a 3-month prescription for Augmentin, the name of a doctor to perform a tonsillectomy, and ds will have PEX once they get ins. approval.

 

Also, in providing the doctor with family history, she said dd11 needs treatment, too. No surprise there.

 

We loved this doctor. She was easy to talk to, and she is extremely knowledgeable. She was good with my son, too.

 

THANK YOU to the more experienced parents on this board. You welcomed me here, encouraged me from Day 1, educated me, and helped me prepare for this visit. I even had all the right labs done ahead of time! I promise to support other parents as I move forward in this journey.

[Kiera]

1tiredmama, I am so thrilled for you albeit 17 yrs too late! There is hope for your son and hopefully an end to your nightmare! I too have been on a journey like yours, my ds 9 has just had his 1st ivig after 9yrs of various labels. Poor kid hasn't felt good a day in his life! When he's in a better place I'm going to return to everyone of his many Drs not to berate them, but to educate them so that they have an open mind with the next kid that comes through their door or puzzling kid that doesn't fit in any box. I've set up at support group in our area with 2 other moms to be there for others as others have helped me. It's only through the power of us parents spreading the word, that hopefully will make pandas awareness as common as an ear infection! Take care and keep us posted on your son's progress!

[minimaxwell]

So happy for you!! You are in good hands with Dr. L my dd17 went undiagnosed for 11 years. Dr. T diagnosed her end of Jan. we are now 8 weeks post lvlG and she is 70% better. So glad you are getting rid of tonsils,IMHO all these kids need them out.

[1tiredmama]

Thank you for sharing my joy. Kiera, you have the right idea. I also intend to educate ds's doctors. They need to know! Mini, I'd love to know a little about your story since our kids are the same age. In particular, I am wondering how ill/impaired your dd got from going 11 years undiagnosed. Our son is extremely impaired and generally ill most days because this has gone on for so long unchecked. We wonder about his prognosis. Even Dr. L. couldn't be sure.

[EAMom]

I'm so glad you found Dr. L....hoping for lots of improvement!

 

(It makes me wonder about our dd...tonsils not big at all...if they should be out or not.)

Edited May 20, 2012 by EAMom

[lulu4]

So happy you have a dx; so sorry it took so long! I know the ###### we've been through for sick months and how tired I am and I am just sitting here in tears for you. Thanks so much for doing all you can. I'm so happy you found Dr. L. (we meet her in Sept.) I am hoping you see improvement soon and I am wishing the very best for you and your son. Cyber hugs.

[ptcgirl]

So glad you were able to get a diagnosis (finally). At least your younger child will not have to suffer as long. Glad the tonsils are coming out. That helped my dd for 9 months (completely symptom free). I just wish I would have kept her on a low dose abx afterward to ward off the infection that got her at the 9 month mark. Hang in there~ Step one finally done! : )