Need dr advice in Delaware

[Delawaremom]

I''m looking for direction with my 8 year old daughter. Our ped is not on board with PANDAS, sent us to ped neuro at CHildren's Hospital of Philadelphia who says that they as a group do not buy into infection being the cause. We need a dr.. We live in DE and have family in CT. I was investigating dr from saving Sammy in NJ. Please advise!!

 

Our story began last MArch after bad strep infection(atypical presentation) compulsive nighttime urinary visits before sleeping for a few months. There was a cough that would not go away, just dry tickle kind. We returned to ped and were told it was probably a habit cough but try Allegra.. Summer seemed better and then cough returned after a small bug picked up atschool. Next visit to ped in december we were told cough was psychogenic. Another bug from school in march and she returned to school a few days later only to have teacher call home and say what happened to daughter--did she have strep or something because she now had lots of facial tics and grimacing in class?? I took her to urgent care that night and had rapid strep test as teacher said 3-4 in class had it. She was negative but this is when everything started. I gave her the antibiotic that urgent care gave her for tonsillitis even though ped advised against without culture. things seemed better for a bit and then we had new tic of eye blinking. I read that certain multivitamin might help so I tried and blinking stopped in 2 days:) then things were good till the end of school. The last week of school our family seemed to have a stomach bug going around:( that Tuesday night she explained to me that she had to touch things a certain way and she was worried that something bad might happen to our dogs. The next night she started spinning around-- first 180 right then 180 left.... She says she has to do for fear something bad may happen if she doesnt...This continues with terrible worries like a beam in the house may fall, etc....She was tested for Lyme--ELISA was negative but she has had recent tick bites( we live in the woods) and vacation all the time in CT! She now has terrible headaches than make her nauseous and stomachaches. New is the migratory joint pains:( her personality has changed and she falls apart at the littlest thing... She seems younger than her 5 year old sister when she was such a mature 8 year old:(

 

Any advise would be greatly appreciated!

 

Thanks!

[Chemar]

Welcome to the forum.

 

I am bumping your post up so others here can respond

[philamom]

Please, please post this on the lyme forum. You need to see an LLMD asap. I have to run but will post later. There are some great LLMD's in CT and Dr. Bouboulis for PANDAS in CT.

[Missmom]

Unless you are very lucky it may take several months to get an appt. to see a specialist, most of them have long wait lists. So my advice is to get on the list but in the meantime print out as much pandas info as you can and get into see another pediatrician. Show them your info and explain this history with them. Maybe you can find one sympathetic enough to give you some trial antibiotics.. Amoxicillin does not work well for most of us so ask for augmentin or Zithromax. Augmentin seems to work better for us. You need to try find someone local who will listen to you for times when you can't get into see one of the specialists... Good luck.

[vermontmoms]

Where do you live in Delaware? We saw a great Ped near Rehoboth...is that close?

[Delawaremom]

Thank you for all the advice so far!

I think I will look for a new ped who is sympathetic for the short term.

 

Vermontmom-- we live very close to Rehoboth!! Who do you suggest?

[Delawaremom]

Thank you for all the advice so far!

I think I will look for a new ped who is sympathetic for the short term.

 

Vermontmoms-- we live very close to Rehoboth!! Who do you suggest?

[Missmom]

Thank you for all the advice so far!

I think I will look for a new ped who is sympathetic for the short term.

 

Vermontmoms-- we live very close to Rehoboth!! Who do you suggest?

Yes.... Do whatever you can to get abx. Until you can get in to see a specialist who will run all the necessary labwork. We had to wait over three months for our apt. With a ped. Neurologist who knew what labs needed to be done. I did have a pretty good pediatrician though who was willing to give my ds the abx. He needed to get us through. Now I have enough prophylactic abx to last almost a year, and plenty of refills on treatment abx for flairs. At least you won't feel as helpless if you are able to try abx. Wishing you the best.

[porkchop]

We live in Maryland, close to ocean city but I take my kids to AI dupont in Wilmington, DE. The neurlogist we are working with is not an "expert" on pandas but he has been extremely helpful in working with us and treating my son. He studied under Dr. Swedo and he is very familiar with pandas.

[Delawaremom]

Thank you all so much-- I feel like we are getting some options now instead of feeling so helpless !!

 

Tired mom-- who do you see at AI DuPont? That is usually where we would go for any ped speciast but our reg ped suggested CHOP this time?? We live in Georgetown so we are less than 2 hours from Wilmington. Thanks so much :-)

[Delawaremom]

Can anyone tell me an easy way to copy my orginal post over to the Lyme forum like Philamom suggested? I tried to copy& paste but didn't seem to work?

[Delawaremom]

Where do you live in Delaware? We saw a great Ped near Rehoboth...is that close?

We are very close to Rehoboth.... Who do you recommend there?

Thanks so so much :-)

 

Kim

[porkchop]

Thank you all so much-- I feel like we are getting some options now instead of feeling so helpless !!

 

Tired mom-- who do you see at AI DuPont? That is usually where we would go for any ped speciast but our reg ped suggested CHOP this time?? We live in Georgetown so we are less than 2 hours from Wilmington. Thanks so much :-)