I have a question about Dr. K.

[thereishope]

reactive,

 

I'm just going to cut to the chase...how bad is his speech? I feel I can ask it that way, since one my kids had a speech delay and is 9 now still with some slight issues and my other one has a severe speech disorder. You can request an eval by the school district and try to get services through them.

[reactive]

reactive,

 

I'm just going to cut to the chase...how bad is his speech? I feel I can ask it that way, since one my kids had a speech delay and is 9 now still with some slight issues and my other one has a severe speech disorder. You can request an eval by the school district and try to get services through them.

Sorry in advance as there is no short way to answer. When my ds9 was at his 3 year checkup on peds office, our ped was concered he had autism as he was not answering her or paying attention to her. I was totally freaked out. We were referred to the developmental ped. The ped saw no signs of autism, felt he was fine, and ordered the speech and hearing eval. The hearing was normal but he was diagnosed with a mild to moderate RECEPTIVE (not expressive) speech delay. He did two months of therapy and they basically told us to stop coming they were just taking our money. I left it at that.

 

Fast forward to age four and severe flare of possible PANDAS. We were back again at developmental ped, same guy (really nice) who says to me "autism does not appear overnight" That was good insight on his part, I guess. I asked him about Aspergers, he said that ds was a little overly intellectual, but we will wait and see. He reassures us again.

 

Over the last few years since then, we have dealt with the possible PANDAS in our ds the best way we know how. He thrived and did well in Kindergarten, reading well above average. In first grade, he also read above average and did well. Model student. In second grade his reading fell to average. I was concered, but thought maybe he just had a summer loss. Now that ds is in third grade I am seeing more issues. We ended up at speech again this year because I got his IOWA scores back from the test he took at the end of his second grade year. He was below for reading. His score for the "listening" component of reading was only a 4 out of 100!!! This is the part of the test the kid has to hear a story read by the proctor and answer questions about it.

 

Yes, the speech therapist at our school did assess him and found no deficits. But she also wanted him to have a full eval due to the prior diagnosis of receptive delay at age 3. The speech lady at the hospital recommende the therapy, as I mentioned. Before setting it up, she wanted me to have him eval again for Aspergers by developmental. So again we are back to see the developmental ped, and he again says no, ds is fine, no Aspergers. He is a really nice doc, very calm and realistic. He told me since he had all A's and B's on the report card not to worry about it. He looked at his handwriting and said, have him learn to type this summer. Made sense to me.

 

Now I realize it is more than just a speech thing. I got his scores from his state reading assesment test and he failed for 3rd grade reading. This is a kid who got a B in reading both times this year so far. He got a B in math the first time and a C the second report card...he is not picking up on the new math concepts. He got A's in all his other subjects. We have a website, study island where you can give the kids a practice test that mocks their state tests. I had him do 2 10 question reading tests this weekend and he got 6 out of 10 right. I had him do 2 10 question math tests and he got 2 out of 10 right on each of those. I am basically watching my son's reading and math skills slip away before my very eyes. That is why I am on this forum.

[Worried_Dad]

all the more need IMHO for real and meaningful healthcare reform that especially takes care of kids!

 

AMEN TO THAT!!!

 

No bill going through our Federal government will be anything but flawed... but, gosh darn it, it's about time somebody did something! We've had to take out loans against our retirement savings to pay for PANDAS treatments (IVIG mostly). In our case, our insurance co (per our HR Benefits folks) supposedly "pre-approved" the 2 rounds of IVIG last summer, based on diagnosis and procedure codes, the service provider, etc. It's been 9 months now, and they still have not processed the claims. Every time I or our HR folks call, we get a different story about why. ARRRGGGHHH!!!

 

FYI, about the Cunningham tests: we did this back when we'd had an endless string of local docs tell us we were "deluding ourselves" about the PANDAS diagnosis and hurting our son in the process. We did not take the Cunningham results as definitive proof... but when the result came back unambiguously consistent with PANDAS (CamK II level, anti-neuronal antibody levels, etc.), it sure gave us some peace of mind. For us, it was worth the price just for that extra evidence that we were pursuing the right path for our son, despite the disagreement of so many local "experts."

 

And - frankly - I'm hoping that by participating in the Cunningham study, we can contribute to the development of a more conclusive PANDAS test that will help other kids in the future. Don't want any other children / families to go through this kind of nightmare, where nobody will agree to treat a tormented child because PANDAS "isn't proven"!

[MomWithOCDSon]

And - frankly - I'm hoping that by participating in the Cunningham study, we can contribute to the development of a more conclusive PANDAS test that will help other kids in the future. Don't want any other children / families to go through this kind of nightmare, where nobody will agree to treat a tormented child because PANDAS "isn't proven"!

 

A double "AMEN" and "Hallelujah!" to that! If I had a nickle for every time I've heard the phrase "isn't proven" since I first heard the term PANDAS, I could probably fund not only my own son's treatment, but at least a dozen others as well!