So Frustrated

[Tamistwins]

Welcome to the forum! May I ask if you saw a PANDAS specialist for the IVIG and did you say what antibiotics he was on before IVIG and if he is still on antibiotics now?

 

Did you test yourself and everyone else in the house for strep?

 

Hi Vickie,

 

Thank you! We have seen a specialist and we have tried many antibiotics the augmentin xr, biaxin, orapred and he has been on zithromax before ivig and he continues to take it.

We have all been tested in our home, My husband and I both showed that we had previous mycoplasma infection and my mother had an active one so she was treated with antibiotics.

[Tamistwins]

We did IVIG recently and they are worse , I am praying and waiting for it to turn around.

 

 

So they both had IVIG? what dose? How long ago? Sometimes things get worse for the first few weeks post-IVIG.

 

I am surprised they are not both currently on antibiotics. Many PANDAS parents find their kids do much better (regardless of whether they've had IVIG or not) when kept on full-strength antibiotics (long term). Azith. and Augmentin are popular ones on this forum. Also, my fear is that if (esp. you son) is still strep positive (even with having IVIG) the benefits of IVIG will be lost if he continues to have a strep infection (or colonization).

 

Could I ask where you live? Are you already working with a PANDAS doc?

 

Then he was given another antibiotic to treat as a carrier, we did not recheck after that.

 

How long ago was this? Do you remember what antibiotic and dose was used.

 

Also, have you tried Advil (ibuprofen)? Sometimes that helps PANDAS symptoms.

Hi EA MOM,

I really don't know what dose they had but it was a treatment over the course of 2 days. My son had treatment aug 25th and 26th and my daughter a week later. My kids are currently on antibiotics and were on it before IVIG. Is it possible for a child to have strep infection while on antibiotics? He is always complaining he dosen't feel well. I'm not sure if it is just one of his routines because he only tells me at night when he needs to go to bed.

I live in NJ and we are working with DR. B. in CT. I do give motrin from time to time, not sure of the results.

[Tamistwins]

I am so sorry you are going through this. I know exactly how you feel. My PANDAS kids now 20 and 15 have a very similiar history to your kids. There were days when I did not like my kids (always loved them). I knew back in late 90's that is was strep related but no doctor believed me. They were always treated for Tourettes, OCD, ADD, ODD. etc. They were treated with prozac, zoloft, imiprimine, and many many more. My daughter got worse until about 12 and son started becoming easier around 9. My son now 15 still has some small issues (slight motor tic, frequent uriniation, food issues) but is a wonderful, sweet, easy teen. My 20 yo daughter has more issues but has just been diagnosed with Lyme. She is on her own, has a great job, goes to college and has good days and bad. She still has some motor tics that come and go. Has some OCD with clothes feeling right, hair isnt right, etc. Continue to fight for treatment for them. Things do get better. We have only recently gotten an official diagnosis and treatment.

 

Hi Bio and adopt,

 

I am so happy to hear that your children are doing better, I can't imagine not having mine get better before they reach teen years. I am so sorry that you are only getting a diagnoses now. It must have been so hard raising them and feeling like there is a problem but not knowing what it is. Not that it's much easier having a diagnoses and not seeing improvement. It is so nice to hear your son is a sweet easy teen. My son is soo difficult and my daughter isn't any easier. Now I am scared my baby has it too. He bangs his head which for some children may be normal at his age but he seems to do it out of anger and frustration and I am thinking it is not normal. He also pinches when he is angry he is 15 months. I just got the cunningham kit for him so that I can know one way or another what we are dealing with. I had him on zithromax too and I think it helped him but he spits it out and I didn't want to continue giving a baby antibiotic for no reason. It's so difficult and I pray I wont go insane before they are helped!

[kimballot]

Hi Kimballot,

sorry it's taking me so long to respond. I am so happy to hear that your son is no longer the way he used to be with regards to disrespect and being "mean" to people. How old is your son? I just feel how can my son not be aware of how he is treating us? He is a smart boy. But he is totally different from how he was before he got really sick so I am praying he too will no longer act this way in time.

 

With regards to keeping track of things, I am so bad with that , do u have any suggestions as to how I can keep record of behaviors?

 

My son had IVIG Aug 25 and 26th and my daughter had it a week later. Since the IVIG my daughter is so much worse. She has become so defiant and willful. SHe screams on top of her lungs and is relentless. Her eye blinking has gotten so much worse and it seems as if she has some sort of throat tick that she never had before, I am feeling sorry that I ever had her do it. My son was so much worse he needed it done, but, because of my daughter's high scores on the cunningham tests, the dr. felt we should go ahead with ivig for her as well before things get worse.

 

Both my children are on Zithromax and after the ivig I got a script for diflucan because my sons finger nails were discolored and falling off, might have been due to the augmentin xr he was on previously.

 

Again thank you for your compassion and responses.

 

Hi Tamistwin - My son is now 13. He is doing much better than he did when he was younger, but I know he is only one infection away from an exacerbation and I hold my breath just like everyone else on this forum.

 

You mention that you have worked with Dr. B and your kids both had IVIG (I am assuming the IVIG was with Dr. . Have you called him and talked to him about the problems? I am wondering what his ideas are.

 

I am wondering too about underlying infections. I would assume Dr. B would check for these - things like mycoplasma and lyme and sinus infections? I am also wondering if your kids are taking probiotics and if they are taking an antifungal medication like diflucan.

 

Also - have you had others in the house tested for strep? (even your baby who is banging his/her head)....