Waiting for Neuro Appt.

[sdrew99]

Hi,

 

I posted earlier and have gotten some great advice regarding which direction to go to find out if my daughter has PANDAS/PITAND. I didn't quite believe it until this past week, when her rages, anxiety and OCD have been out of control. On Friday afternoon, I found out my son has strep...which after reading, makes total sense why she has been losing it this week.

 

So - I will be calling to make an appt. with a pediatric neurologist on Monday that believes in PANDAS, but I believe there is a 2-3 month wait.

 

What can I do to help her in the meantime? Advil? I read that sometimes ibuprofen helps, and this morning after I saw that she was going off into a potential rage, I managed to calm her down and gave her 200mg of ibuprofen - 1 hour later, she was fine, and has been well all day.

 

Is there anything else that I can buy over the counter to help her while we wait for the doctor visit?

 

Thanks so much!

 

Stephanie

8 year old daughter with potential PANDAS

[MomtoJake]

Hi Stephanie! Sorry you have to be here, but glad you found this forum. Here is what we did while we waited to see Dr. Murphy. I went to our pediatrician armed with video of my son and this article:

 

http://www.ocfoundation.org/pandas/

 

She gave us 90 days of Augmentin despite negative rapid strep test. It literally saved my son from something that I cannot even describe. We gave round the clock Advil, tried to lower his stress level and the level of stress in the house in general. If I were you I would find a way to get on a treatment dose of abx anyway you can to see if it makes a difference.

Edited March 11, 2012 by MomtoJake

[AmySLP]

I would also ask your pediatrician for ABX until appt and document daily her symptoms to note is there is symptom improvement, which may help support PANDAS dx.

[T_Mom]

I absolutely agree -- that you cannot wait 2-3 months with your child like this (for a myriad of reasons!!) Can you get a trial of antibiotics from your pediatrician, have the ped. call one of the PANS doctors to have a phone consult if necessary, you cannot wait 2-3 months...things can get worse.

[sdrew99]

I just cannot believe it (well, I can, but I felt like I was making things up in my mind)

 

I took your advice, and took her to the ped this morning (the same one that diagnosed my 5 year old with strep on Friday) She tested positive! Zero symptoms, aside from dark circles under her eyes and, of course, the rages this weekend. Her throat wasn't even pink. I actually cried because I was so relieved that I might finally have an answer after 2 years.

 

She put her on Omnicef for 10 days. She wants her to come back and get re-swabbed then. If she's still positive, we'll go from there. Thanks to the wonderful people on this forum, we have an appointment with a PANDAS-believing pediatric neuro on May 9th (and we are on the cancellation list).

 

Thank you all so much.

 

Stephanie

[corinthdad]

I just cannot believe it (well, I can, but I felt like I was making things up in my mind)

 

I took your advice, and took her to the ped this morning (the same one that diagnosed my 5 year old with strep on Friday) She tested positive! Zero symptoms, aside from dark circles under her eyes and, of course, the rages this weekend. Her throat wasn't even pink. I actually cried because I was so relieved that I might finally have an answer after 2 years.

 

She put her on Omnicef for 10 days. She wants her to come back and get re-swabbed then. If she's still positive, we'll go from there. Thanks to the wonderful people on this forum, we have an appointment with a PANDAS-believing pediatric neuro on May 9th (and we are on the cancellation list).

 

Thank you all so much.

 

Stephanie

 

our dd16 was un diagnosed for about 10 months while bouncing from test to test & long waits for neuro. she never took anything in that time so there was no confusion in results after changing her diet,(no sugars & replaced dairy with almond milk & organics) , adding a good non synthetic vitamin D & metal detox in the 9th month . it took a few weeks to kick in but she went from the couch to being able to start the softball season & is making it through the varsity practices in that short amount of time. we just got enough of a diagnosis last week & started biaxin abx & culturelle probiotic this weekend. it made her sick the first day but she is still doing well. i dont know if this helps much but after waiting so long , we had to do something in our power to help & now i believe nutrition & proper vitamin levels is a very good place to start . most doctors arent educated in this because healthy people are bad for business . sounds like your on a good path now .

Edited March 12, 2012 by corinthdad

[KaraM]

Stephanie,

 

It is strangely relieving to get that positive test - especially when there are no "typical strep" symtpoms.

However, I have to prepare you that 10 days of Omnicef may (will probably not) be enough. You may want to arm yourself with the latest information on PANDAS. The White Paper recently published and a printout of the most recent NIMH website. You can get both of those at PANDASnetwork.org. You may need these to convince your pediatrician to prescribe a longer dose or a different antibiotic.

 

In the meantime, you may also want to make an appointment with a doctor who is well versed in PANDAS/PANS. Even if you have to travel, you will save yourself a lot of trouble and frustration and help your child more quickly and thoroughly if you go with someone who has a lot of experience with PANDAS kids.

 

What part of the country do you live in? Most of the PANDAS experts are on the east coast. There is one in Chicago as well.

 

Best wishes,

Good luck!

 

Kara

 

 

I just cannot believe it (well, I can, but I felt like I was making things up in my mind)

 

I took your advice, and took her to the ped this morning (the same one that diagnosed my 5 year old with strep on Friday) She tested positive! Zero symptoms, aside from dark circles under her eyes and, of course, the rages this weekend. Her throat wasn't even pink. I actually cried because I was so relieved that I might finally have an answer after 2 years.

 

She put her on Omnicef for 10 days. She wants her to come back and get re-swabbed then. If she's still positive, we'll go from there. Thanks to the wonderful people on this forum, we have an appointment with a PANDAS-believing pediatric neuro on May 9th (and we are on the cancellation list).

 

Thank you all so much.

 

Stephanie

Edited March 12, 2012 by KaraM

[AmySLP]

My daughter never had a classic symptom in all her positive swabs and cultures either, but it took nearly three years to clear her of the behaviors and tics that were her symptoms . Beg for ABX if you have too, even if your ped will just give penicillin, it's better than nothing while you wait until May.