Pediatrician started ignoring us and we finally found new and better&#

[sptcmom]

I am SO relieved today!! DS8 is 5 weeks post IVIG with Dr. K and has had some flareups last week. Dr K hasn't answered my desperate emails requesting a dose increase and his cell is constantly turned off, Dr T is also unreachable last few days, DS's 74 yr old pediatrician is upset because against his advise we went ahead and did the IVIG anyways and won't return my calls. So I have been researching and the Chief of pediatric emergency medicine at a local children's hospital (Robert Wood Johnson) has an office the next town over!! We saw him today, he totally understands PANDAS, gave me the high dose Augmentin, is willing to use Dr K's protocol for IVIG should we need another one! He reassured me I wouldn't need to go all the way to Chicago again (we had a nasty experience with Oak Book Billing dept) etc. I am just so thankful to God! HE must've heard me when I was posting that I have been thinking about selling my soul to satan if that will give my ds his life back. Thankyou GOD! I have been going CRAZY trying to be able to have a decent conversation with the PANDAS docs to no avail.

 

Just wanted to share. I've had such a stressful two weeks with the flare ups, nasty personality, aggression etc I get head butted, kicked, punched, bitten, yelled at, pinched daily two weeks now. I'm all beat up and cookoo but relieved to find a great doc.

Edited June 28, 2010 by sptcmom

[sptcmom]

so sorry, can't figure out how to take away the silly symbols at the end of the title of the post.... Don't know how they got there.

[tantrums]

Who is that? Is it Bristol Myers Squibb hospital?

 

I'm so glad you got some help!! Do you think he will be good for follow up?

[kimballot]

Isn't it just amazing when things fall into place like this???

[melanie]

I am SO relieved today!! DS8 is 5 weeks post IVIG with Dr. K and has had some flareups last week. Dr K hasn't answered my desperate emails requesting a dose increase and his cell is constantly turned off, Dr T is also unreachable last few days, DS's 74 yr old pediatrician is upset because against his advise we went ahead and did the IVIG anyways and won't return my calls. So I have been researching and the Chief of pediatric emergency medicine at a local children's hospital (Robert Wood Johnson) has an office the next town over!! We saw him today, he totally understands PANDAS, gave me the high dose Augmentin, is willing to use Dr K's protocol for IVIG should we need another one! He reassured me I wouldn't need to go all the way to Chicago again (we had a nasty experience with Oak Book Billing dept) etc. I am just so thankful to God! HE must've heard me when I was posting that I have been thinking about selling my soul to satan if that will give my ds his life back. Thankyou GOD! I have been going CRAZY trying to be able to have a decent conversation with the PANDAS docs to no avail.

 

Just wanted to share. I've had such a stressful two weeks with the flare ups, nasty personality, aggression etc I get head butted, kicked, punched, bitten, yelled at, pinched daily two weeks now. I'm all beat up and cookoo but relieved to find a great doc.

 

 

We finished 1g IVIG #8 friday and im not real happy.I also just finished praying ,begging god to make this end.I am in NJ also and just PMed you.

 

Melanie

[sptcmom]

Yes Bristol Myers Squibb is within RWJ so the doctors are same. He sounded so confident and genuine today. There was a slight glitch in his script, I called him, he personally answered thru this service and then called pharmacy and fixed the glitch . I mean thats the kind of doctor that earns my respect- genuinely caring and respectful of a worried mother enough to answer all her questons without a seperate huge charge for the phone call. His partner is a wonderfully caring lady too. They have been on NY/NJ top Docs list forever. I need something positive in my struggle right now and I hope this little bit of goodluck isnt just smoke and mirrors.

Edited June 29, 2010 by sptcmom

[tantrums]

Please do let us know if he continues to work out! I have an appt with rheumatology at BMS in October. It was a 4 month wait though I'd rather go there than CHOP even though that appt is first, so I'm keeping BMS in my back pocket. If rheum doesn't work out, I can try your doctor.

[JAG10]

Ugh, tantrums... who are you scheduled to see at CHOP???

[saidie10]

I am SO relieved today!! DS8 is 5 weeks post IVIG with Dr. K and has had some flareups last week. Dr K hasn't answered my desperate emails requesting a dose increase and his cell is constantly turned off, Dr T is also unreachable last few days, DS's 74 yr old pediatrician is upset because against his advise we went ahead and did the IVIG anyways and won't return my calls. So I have been researching and the Chief of pediatric emergency medicine at a local children's hospital (Robert Wood Johnson) has an office the next town over!! We saw him today, he totally understands PANDAS, gave me the high dose Augmentin, is willing to use Dr K's protocol for IVIG should we need another one! He reassured me I wouldn't need to go all the way to Chicago again (we had a nasty experience with Oak Book Billing dept) etc. I am just so thankful to God! HE must've heard me when I was posting that I have been thinking about selling my soul to satan if that will give my ds his life back. Thankyou GOD! I have been going CRAZY trying to be able to have a decent conversation with the PANDAS docs to no avail.

 

Just wanted to share. I've had such a stressful two weeks with the flare ups, nasty personality, aggression etc I get head butted, kicked, punched, bitten, yelled at, pinched daily two weeks now. I'm all beat up and cookoo but relieved to find a great doc.

 

So glad you found someone to help! It must be such a relief at this definite time of need right now. You guys will get through this!!

[tpotter]

That is so unlike Dr. K. But, he has been out of the country for the past week. I don't know if that had anything to do with it. Not unlike Dr. T., though. That's fantastic you found someone close to you.

[tantrums]

I scheduled an appt with rheumatology at CHOP. I've already heard about Dr. Elias and refused to see her

[melanie]

I scheduled an appt with rheumatology at CHOP. I've already heard about Dr. Elias and refused to see her

 

 

I PMd you

[JAG10]

I scheduled an appt with rheumatology at CHOP. I've already heard about Dr. Elias and refused to see her

 

Good for you! Because all Jo Elia would have done is "discussed" the course of the illness with you which you can do with us from the comfort of your own computer, no co-pay and no waiting

 

Back in January, I had asked her about participating in the Cunningham study.... she did not seem as knowledgeable as you would expect for CHOP's "pandas expert." Said it wasn't meaningful bcs it showed elevations for too many things including "typical" OCD. What??? Then I looked at the chart she was showing me which correctly indicated CaM K was NOT elevated in typical OCD, but was in SC, PANDAS, ect. WHATEVER!!! I moved on quickly and I'm glad you aren't wasting your time.

 

As in my "confession" post, treatment for PANDAS in the Phila area per our frustrated and disgusted pediatrician is DO NOTHING.... thanks, but NO THANKS!!!

 

Bet it wouldn't be DO NOTHING if it was their kids!!!!!

[JAG10]

That is so unlike Dr. K. But, he has been out of the country for the past week. I don't know if that had anything to do with it. Not unlike Dr. T., though. That's fantastic you found someone close to you.

 

I agree, and tpotter and I can both advise you to not waste your time with CHOP!

[Doug]

That is so unlike Dr. K. But, he has been out of the country for the past week. I don't know if that had anything to do with it. Not unlike Dr. T., though. That's fantastic you found someone close to you.

 

I agree, and tpotter and I can both advise you to not waste your time with CHOP!

I think we all need a back up plan on what to do when we can't get a hold of any doc's

on the meds that our kids take.