post-strep syndrome

[momaine]

Thank-you everyone for your help. I am definitely overwhelmed & trying to understand as well as do the right thing. The immunologist said to go ahead with the pnVK till more tests are done as he thought the titers were not that high. I'm so confused:(. But we are submitting a special urine test the immunologist gave us & we meet him in 2 weeks. My son is 3 weeks post ivig & 1 week post iv antibiotics & has been on oral abx. I guess i need to be patient but it is so hard & in the meantime heartbreaking to see my son as he is.

Do you know what dose IVIG he had? Low dose can actually worsen pandas symptoms for some kids but high dose (over 1.5g/kg) has anti inflammatory effects and seems to work better with pandas kids in most cases.

 

I'm so sorry to read your of your suffering and hope things turn around soon.

[chodnett]

Yes, Your story is unbelievable that even with all the press on this. Doctors in Texas are still not budging. It is wonderful you found an immunologist to help. I live in north Texas we have gone to doctors that said that is a controversial diagnosis (without even looking at my daughters blood work) to look for infection. That was almost 2 years ago. When will they wake up? We travel out of state for treatment and I would highly recommend getting Madeleine Cunningham's test for your son. It will tell you if he has PANDAS. Good Luck.

[kimw]

The Immunologist sent my son's blood work to a PANDAS research. Would that

have been Cunningham's?

[tpotter]

The Immunologist sent my son's blood work to a PANDAS research. Would that

have been Cunningham's?

 

Might have been.

 

Here's my suggestion. It sounds like your immunologist is on the ball. I would drop the ID specialist at the least, and use the immunologist for your "team leader."

 

Good luck. Big cyber hug.

[kimw]

Thank-you everyone for your help. I am definitely overwhelmed & trying to understand as well as do the right thing. The immunologist said to go ahead with the pnVK till more tests are done as he thought the titers were not that high. I'm so confused:(. But we are submitting a special urine test the immunologist gave us & we meet him in 2 weeks. My son is 3 weeks post ivig & 1 week post iv antibiotics & has been on oral abx. I guess i need to be patient but it is so hard & in the meantime heartbreaking to see my son as he is.

Do you know what dose IVIG he had? Low dose can actually worsen pandas symptoms for some kids but high dose (over 1.5g/kg) has anti inflammatory effects and seems to work better with pandas kids in most cases.

 

I'm so sorry to read your of your suffering and hope things turn around soon.

 

 

His dose was 2.6/kg so my undrestanding from the immunologist, my ds was getting the right dose.

[kimw]

My ds has fever, diahrea, swollen ankle, and had a tantrum/anxiety last night not wanting to take a bath. I called dr. to change abx to your suggestions. Hoping to hear back soon. I am so disheartenen. I know they tell us that it takes time but I want him better NOW, ya know? Sorry:(. When you guys mention a relapse can this mean worst than before? I'm just scared that we are going to end up in the hospital again.

Kim

[peglem]

I'm so sorry, but yes, a relapse can be worse than before. Hope a change in abx helps!

[kimw]

Ok good news. We saw our old PCP yesterday and he is going to be our Quarter back for us. He agrees that my ds has PANDAS and that he had Rheumatic fever in the hospital. He changed his abx to Keflex (1 tsp 4 times daily) and prescribed 5 day steroid tx. Dr. will be talking to immunologist and get a new ID specialist involved. I feel so much better but still worried that we might be too late for my ds as he has 101 fever, diahrea with blood, swollen foot, and of course major anxiety issues with minor tics. I just don't want a major relapse b/c what we went through prior to hospital and during was traumatic needless to say:(.

 

Kim