IVIG? Tests?

[Tattoomom]

How did you know your child needed IVIG? What type of doctor orders/administers this?

 

We've been on antibiotics off and on since May. Started on Amoxicillin and switched to Zithromycin. We've seen improvements, but nothing major and the improvements we see diminish when we stop antibiotics. Zoloft and Tenex have been added by the Psychiatrist, but aren't helping much. Maybe we aren't on the right antibiotic? Or maybe we haven't consistently stayed on long enough?

 

DD was diagnosed PANDAS after her last strep infection in May, but I know it all started with a sinus infection in February 2011 so we're well over a year and a half into this nightmare. She's had anti strep and mycoplasma titers that were normal, but she fits the bill and clinically responds to abx.

 

What now????

 

Edited to add... I asked the Ped for steroids but she didn't feel comfortable with that.

Edited September 26, 2012 by Tattoomom

[Dedee]

You need to see a PANDAS specialist as soon as possible. Most likely this will involve travel but it will be worth it in the long run. Make your appointment now because it may take a few months to get in. Local physicians and pediatricians are not going to be able to get you through this. I know it seems like a lot of trouble but it really is necessary. Most folks here travel for their specialist. If you live close to one of the good ones you are fortunate. In the mean time you can try ibuprofen for inflamation and keep the antibiotics going.

 

Dedee

[beeskneesmommy]

You should absolutely get with a specialist ASAP! The wait is 2+ months for them, usually, so I would advise getting after it today! IVig is a personal choice. For us, abx helped a lot. Our son was really sick for a while and after 2+ years of abx, he is on track with manageable symptoms. However, we could never stay at that 95-100% spot. Whenever he was exposed to something he would flare. He just had his 1st (and hopefully, only) IVig last week. Our hope is that, at least for a while, his immune system will be strengthened and he will be pushed into what we call recovery and what others may call remission. We just felt that it had been a long, long time on abx and that it was time for a bigger gun. So far, so good.

[nicklemama]

I would check the NIMH website and make some inquiries to see if you child qualifies for the IVIG trial being conducted by Dr Swedo. I would also make an appt to see a PANDAS specialist nearest you. It might take a few months to get the appt, depending on who you see. You can see Dr T in NJ pretty quickly. He only sees PANDAS patients. You can see Dr K, usually w/in a month in Chicago. If you see Dr B or Dr L, you will wait months.

 

If you let us know the area you live in, others here may be able to steer you to doctors in their area that treat PANDAS. Unfortunately, relying on your pediatrician is probably not going to get you the best treatment for PANDAS. Your ped seems very open and would be more likely to work w/ one of the experts on the direction of care and treatment. Many of us struggle w/ our pediatricians.

 

IVIG is really best left to prescribing by a PANDAS knowledgeable doctor. We went with IVIG after 7 months of treatment dose antibiotics daily and had reached a plateau of improvement.

 

A week or two, here and there, of abx for treatment of PANDAS is probably not going to be the treatment your child needs.

[kos_mom]

Since your pediatrician is open to trying things, you might consider a phone consult with Dr. K or Dr. T. You can usually get that fairly quickly, at least with Dr. T. They could put togther a protocol for your pediatrician to use. Also think very good idea to try NIMH--all treatment and travel would be covered by them.

[Tattoomom]

Since your pediatrician is open to trying things, you might consider a phone consult with Dr. K or Dr. T. You can usually get that fairly quickly, at least with Dr. T. They could put togther a protocol for your pediatrician to use. Also think very good idea to try NIMH--all treatment and travel would be covered by them.

 

 

We are in Jacksonville, Fl. I know Dr. Murphy is down in south Florida (we're north) but when I called her office, they said we'd have to come in every 2 weeks and I just can't imagine how in the world we would be able to do that. We are a one income family with 4 kids. Money is extremely tight and we have no credit to rely on. Dr. T charges for phone consults, correct? Would they charge my Ped if I could convince her to call one of them?

 

I am very interested in learning more about NIMH... can someone link me to how I can get started?

[Tattoomom]

Since your pediatrician is open to trying things, you might consider a phone consult with Dr. K or Dr. T. You can usually get that fairly quickly, at least with Dr. T. They could put togther a protocol for your pediatrician to use. Also think very good idea to try NIMH--all treatment and travel would be covered by them.

 

 

We are in Jacksonville, Fl. I know Dr. Murphy is down in south Florida (we're north) but when I called her office, they said we'd have to come in every 2 weeks and I just can't imagine how in the world we would be able to do that. We are a one income family with 4 kids. Money is extremely tight and we have no credit to rely on. Dr. T charges for phone consults, correct? Would they charge my Ped if I could convince her to call one of them?

 

I am very interested in learning more about NIMH... can someone link me to how I can get started?

 

 

I found it. She wouldn't qualify since she's recently begun CBT and placed on SSRI.

[Christianmom]

Yes, Dr. T will charge for a phone consult, the same amount as if you were in his office. He charges in 15 min. increments so if you go that route, you'll want to be organized before you call and will want to keep your conversation as short as possible (he will NOT be organized ). Also, he will require a new patient consult first (I would think) which I believe is about $400.

 

I would think he would talk with your pediatrician for free (or at least reply to an e-mail). He is very kind in that way. Make sure in the heading that it states clearly that the e-mail is coming from a doctor's office so he doesn't disregard it. He gets an ENORMOUS amount of e-mails as you can imagine, so you don't want to get lost in the shuffle.

[kos_mom]

Dr. K does answer initial inquiring emails very promptly but he is clear on his site he only communicates with parents. Try sending him an email tonight listing tests you've done, medication you've taken and results and asking for recommendations for further testing and/or change in abx. If his email back is very responsive--great. Work that with your pediatrician. I am betting that even if he gives abx rcommendation, he will still say only IVIG will really solve your problem. In any case, if you write tonight, you will likely get a response one way or another by tomorrow or the next day. If the Dr. K route doesn't work, have your pediatrician contact Dr. T. If I went that route, in your place I might try drafting the email for the pediatrician--she may not use it but at least she'd have down in writing the main things to be addressed from your point of view.

[nicklemama]

http://intramural.nimh.nih.gov/pdn/studies.htm

 

This is the URL to the IVIG study. I could not link it. Sorry. You will have to scroll down and find the info about the PANDAS study. Its free and the travel and costs are paid for if your child is accepted into the study. Call them tomorrow.

 

 

Oops, looks like the link did take. Just click on it.

Edited September 26, 2012 by nicklemama