my family is in CRISIS...please help

[bellstone]

We are in crisis mode over here. My four year old son can no longer function. Everything has to be said with correct intonation, we have to repeat the word okay a minimum of 2x to everything he says without my 1 and 2 year olds interrupting....the list goes on and on. We are not able to leave the house. He is in a constant state of melting down. It breaks my heart. Our pediatric neurologist has dx my son with severe OCD and Tourettes. Upon my insistence his doctors checked for PANDAS with an antidnase B and strep titer testing. Results were normal. To my knowledge my son has not had a known strep infection, nor have my other children. Our environmental md, neurologist, pediatrician have said the above listed info rules out PANDAS. Does it? I am having a difficult time understanding such severe and sudden onset of all of these symptoms. We have been dealing with this for almost 2 years now. Doctors want to start prozac and I am having a hard time justifying putting such a young child on drugs. FYI, we have tried chiropractic, a so so (in my opinion) environmental/DAN doctor. We are supplementing with ASD plex (multivitamin) and getting ready to try inositol. We are on an almost no sugar diet, no preservatives, no dyes. Any other suggestions. How do some of you cope? I do not see light at the end of the tunnel for functioning again....We are in a decent sized city in the midwest but no Pandas docs here. We are on a tight budget and my husband is ready for us to try the Prozac. I would love to hear suggestions. Thank you.

 

fyi, i have posted before but was having difficulty signing in and could not be found on the forum when I gave my email, etc. so my screen name has slightly changed.

[JenniferG]

We are in crisis mode over here. My four year old son can no longer function. Everything has to be said with correct intonation, we have to repeat the word okay a minimum of 2x to everything he says without my 1 and 2 year olds interrupting....the list goes on and on. We are not able to leave the house. He is in a constant state of melting down. It breaks my heart. Our pediatric neurologist has dx my son with severe OCD and Tourettes. Upon my insistence his doctors checked for PANDAS with an antidnase B and strep titer testing. Results were normal. To my knowledge my son has not had a known strep infection, nor have my other children. Our environmental md, neurologist, pediatrician have said the above listed info rules out PANDAS. Does it? I am having a difficult time understanding such severe and sudden onset of all of these symptoms. We have been dealing with this for almost 2 years now. Doctors want to start prozac and I am having a hard time justifying putting such a young child on drugs. FYI, we have tried chiropractic, a so so (in my opinion) environmental/DAN doctor. We are supplementing with ASD plex (multivitamin) and getting ready to try inositol. We are on an almost no sugar diet, no preservatives, no dyes. Any other suggestions. How do some of you cope? I do not see light at the end of the tunnel for functioning again....We are in a decent sized city in the midwest but no Pandas docs here. We are on a tight budget and my husband is ready for us to try the Prozac. I would love to hear suggestions. Thank you.

 

fyi, i have posted before but was having difficulty signing in and could not be found on the forum when I gave my email, etc. so my screen name has slightly changed.

 

 

Have you tried antibiotics?

[butterflymom]

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Edited October 9, 2015 by tampicc

[kimballot]

I am so sorry to hear about the state of your family. Please know, most of us have been in similar situations at one time or another.

 

Your son does not need to have a current strep infection to have PANDAS/PITAND. Once a child has PANDAS it appears that any inflammation can trigger an exacerbation. That includes bacterial infections, viruses, and even allergies. Furthermore, some children do NOT have elevated antidnaseB and ASO titers even when they have a strep infection.

 

Has your son been tested for mycoplasma and lyme? Does your son have sinusitis or ear infections? Does your son have allergies? Have the other members of your house been tested for strep, mycoplasma or lyme?

All of these are possible triggers for what you are seeing. We were told for many years that my son did not have PANDAS because he did not have elevated strep titers when we measured. In reality, the initial strep infection probably happened early in life, and after that it was typically sinusitis that triggered PANDAS symptoms. Last year he needed major sinus surgery and his only symptoms were PANDAS symptoms. Thankfully, we did not start him on an SSRI without first checking for infections.

 

Obviously, I do not know if your son has PANDAS, and it is not easy to rule it in or rule it out. Please know that the PANDAS road is a long one and it can be an expensive route to take. Is there a pediatrician in your community who is PANDAS -friendly? That may be the best place to start - finding a doctor who will support your desire to look for potential underlying infections.

[peglem]

I agree that normal titers do not rule out PANDAS. In fact, a LOT of PANDAS kids have negative titers. If you can find a doctor who will let you try a month of full dose zith or augmentin a positive response to abx would be a good indicator. You might try sort of bargaining w/ them- saying you'd like to try that before psych meds.

I'm assuming you have already swabbed for strep? Many PANDAS kids also do not have typical strep symptoms (sore throat, fever, etc) so, if you haven't done so already-that's worth a try.

 

One more thing that sometimes helps is ibuprofen. It has an anti-inflammatory effect that sometimes decreases PANDAS behaviors.

[EAMom]

where do you live? Maybe someone can rec. a doc.

 

I would also make sure to get throat cultures on everyone in the household. Do the 72 hour culture if the rapids are negative. (Do this before starting any antibiotics.)

 

I also ditto Peglem's recommendation ... a 1 mo. trial of augmentin and/or azithromycin. Also, you can try Ibuprofen...give the usual dose 3-4x daily for a couple of days, to see if you notice a difference in behavior. Not all PANDAS kids will improve on advil, but it helps some.

Edited April 3, 2011 by EAMom

[nicklemama]

My DS7 has never had a documented case of strep. He has had yearly ear infections. His PANDAS came on after the FluMist. Antibiotics really turned him around. I could not find anyone locally to help me. I consulted w/ one of the above named PANDAS docs.