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Rachel

Rheumatic Fever: A Different Treatment Plan?

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This last week my son caught strep throat again while on an antibiotic. The first time happened back in January. With some recent testing, some doctors are begining to suspect that my son had rheumatic fever when he was young. This testing is being done through some research studies and shows these antibodies have affected the heart. My son has also had testing in the past that showed elevated Anti- Dnase B Strep antibodies. Which I think this means he has had past infections in the past. I was told that it was not normal to be getting strep while on an antibiotic. So my son is going to getting a Penicillin shot every 3 weeks and he is also going to be getting monthly low dosage IVIG trestments. Our insurance has approved of the IVIG.

 

The IVIG treatment will be done inpatient this weekend. Our cardiologist is in charge of the treatment. He is aware that my son has a low IGA. I can only think of a couple of times when this rheumatic fever might have happened. This problem is also caused by strep. If it does not get cleared up, does the strep hibernate in the body and caused the antibodies to build up? With this type of situation, I could see how this would affect blood pressure and heart rate.

 

I am excited that my son is going to be doing the IVIG but I'm hoping it won't make his symptoms worse. I have explained to him that this is a possibility and that it may take several treatments before any progress is made. I am going to contine to work on his diet and his cardiologist is also interested in see his 23 and me test results. He also told me to go ahead and try P5P with my son at night to see if it will help with sleep issues. Since this strep infection started, he is having trouble getting to sleep.

Edited by rachel

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Let the healing Begin! My son is receiving 40 grams of Carimune IVIG. His infusion rate is 25. The best way I know to explain this is that the neuro immune antibodies have been found that affect the heart and brain. This has caused the POTS and all his other strange unusal symptoms. He also caught strep agan this month while on an antibiotic. If all goes well, my son will be released later on this afternoon. He did have some type of reaction yesterday but things did calm down. The doctor is not sure if the rash occured because the infusion rate was raised or because of an shot of pencillan. However, they were quick to act with benadryl and the rash was gone within an hour. IVIG was started again at a rate of 25 and my son has not had anymore problems. His headache did increase some but we are trying to keep him hydrated as much as possible. Strep seems to be the main problem but the mycoplasma IgM antibodies are going to be watched. If all goes well, my son will be released this afternoon. In another 4 weeks, my son will be coming back for another treatment.

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Glad to hear things are going well so far. I have never heard of ivig for rhumatic fever, but it makes sense. If it helps pandas kids why wouldn't it also help rf patients as well. Keep us updated, thanks.

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My son had a delayed reaction last night. He came home yesterday and late last night he ran a low grade fever 100. He broke out in a rash but fever and rash were gone after 2 hours with treatment. His headache is a little worse but this may happen after this type of treatment. His doctor is pleased that everything has gone as well as it could.

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DD16 also has a rheumatic fever diagnosis with brain and joint complications with no detectible heart involvement. DD has or at one time had profound and debilitating symptoms including joint pain and swelling, basal ganglia (caudate nucleus) inflammation (resulting in OCD aversions, tics, chorea, mutism, enuresis, negativism, anorexia…).

 

Her major treatments have included IVIG, Cellcept and RItuximab which have put her on a very slow but steady course of recovery after almost two years. She is on azithromycin prophylactically but has had one confirmed bout of strep since on it. It is important to know that it's not just the strep - but the destructive antibodies that can remain in the body for a great deal of time. We know that in Hepatitis C, for example, that it can take a newborn from a few weeks to up to 18 months to clear his mother's antibodies from his system. One theory is that my daughter, who has a profound expression of symptoms is on the slow end of the spectrum in cleaning her problematic antibodies - even with treatment.

 

DD, always seems to have a tough day or two post IVIG but then it works significantly for about three to four weeks. It took several infusions before we saw any real changes at all, but we are confident they have been central in her recovery.

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Surfermom,

This treatment describes my daughter. She just had her first rituximab cycle last month. Did your child repeat a course of rituximab?

Mine is doing excellent now, after many consistent, successive treatments.

Rachel, I am so excited to read these posts about tx. I think you are moving in the right direction. Best wishes!

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powpow, I remember reading about your daughter and am so pleased to hear about her improvement.

 

DD16 had two Rituximab treatments late last summer. Because the trajectory of her improvement, while observable, is still not what it could be, she is about to have a third infusion.

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Did she have the two weeks apart or a few months?

Mine had dose one and then ivig one week later, then dose two one week after that.

Hopefully that will be it!

Oh and thanks:)

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Thank you so much for replying to the post. I have had such a hard time understanding all of this. My son's headache is a little better this morning. He has also had his methyl B-12 shot this morning and I believe that has also helped.

 

Our cardiologist in Oklahoma is in charge of all the treatments because our insurance will not let ds be treated outside the state. He will be having another treatment in 4 weeks. He is also on Bicillin L-A penicillin shot which will be given every 3 weeks.

 

Surfermom and Powpow What is a normal dosage for IVIG for kids? Does it vary? My ds was only given 40grams but he could only tolerate a 25 infusion rate. So he had to spend the night in the hospital. I will ask our doctor about the other medications. We would have never figured this out without the help of the Texas doctor, PANDAS research doctor, neurologist, and the POTS research doctor.

 

Doctors are beginning to figure out that POTS is related to an autoimmune problem. Our cardiologist is able to collaborate with these doctors to get our son on a road to recovery. He has told us to be patient because it may be a long road to recovery.

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Rachel, DD was initially dosed at 2 grams per kilo of her weight and then went to 1 gram per kilo. That puts her at a current therapeutic dose of around 42 total. I can't recall the rate as it is ramped up during infusion but we do it over about five to six hours in total. DD is given Benadryl and Tylenol before each infusion starts to prevent side effects. Make sure you ask about this if this is not part of your child's protocol.

 

Powpow, DD is undergoing the exact same protocol timing as your daughter. This next treatment will be nine months since she had her first Rituximab infusion. We had hoped the first two infusions would have been her only course but she is still not responding as rapidly as we had all hoped, thus this second round. When her immune system was first suppressed, she got strep once, one bad cold and numerous inexplicable open sores that were slow to heal.

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Headache is typical. When my ds had IVIG, I was given a steroid to administer. I was told that it was important to give steroid as soon as a headache emerged. It did. Gave the steroid, headache went away immediately.

 

My son had Rheumatic fever about 2 years before Pandas symptoms. It is seen in enough Pandas kids that it is noted in many researchers criteria. Interesting...makes sense

 

My ds had joint paint for years. Did not make the connection. When he exploded with first Pandas flare, and treated with abx for 6 weeks, his joint pain/RLS went away and never returned. So yes, I think it hides in the joints. Some researchers believe that it is there in the joint that he Strep mutates while hiding in the joint. By imitating similar protein surrounding heart/brain cells.

 

For our child, this is how I believe the disorder of Pandas was tripped off...

 

I am glad that your child is getting some good treatment!!!

 

Best of luck

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Quannie

I would like to know more about the New Chapter Turmeric Force. Are you using the lowest dosage or did you have to go up on it more to see the results? I want to try this with my son. I consider this a food supplement and shoud be safe to try. My son does not have any food allergies. I tried to PM but it would not go through.

 

My son was given all the premeds before treatment and they gave him saline with the infusion. His headache was a little better yesterday but he says his vision is still fuzzy. Is this normal after an infusion?

 

This makes more sense about it hiding in the joints because my son complained of joint pain in the knees, ankels, and hip when trying to walk when this started 3 years ago. This is finally beginning to make more sense. I'm just so glad that the doctors are beginning to get this figured out. I could just cry because it's been such a long and stressful haul. Just hope we start to see some improvement after some more treatments. PEX is not out of the question but we are waiting to see if the IVIG will be enough for him.

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Ok you ladies I have my heAd spinning now reading all the latest threads as I've not been on in a bit and I have brain gig and short term memory issues (see below)

 

My dd11 Kawasaki's PANDAS kid , c677t homozygous, (and I) have both been sick intermittent. Mold was a issue in our house in Seattle. Like SFmom they ripped open a wall in August to find black and white mold. I had been sick for toe years with bizarre ailments. Dd was holding her own due to incredible naturopath.

 

Moved to Santa Cruz, both if us have been consistently ill. I have hAd a bizarre rash show around my thyroid every other month for seven months. Brain fog, exhaustion, night sweats, weight gain (I never gain in last four months +12 pounds zero energy normally work out 3x a a week) gut issues, swollen joint. I kept Attributing it to stress, thyroid (I'm hypo) and menopause (forced early onset by a mirena IUD years ago that have me recurrent strep and UTI bouts had to see infectious disease Dic month long and course)

 

Dd has been sick every month with a cold. January /feb pneumonia asked doctor could it be mycoplasma (we have new gecko and new pet rats) he just hit her with antibiotic. Dd started having major joint pains and muscle aches etc in January.

 

Read about pain and doctor prescribed omnicef doc put her in Monday at my in distance. Called back Tuesday as she was 102 cough snotty, asked for mycoplasma fix said not necessary.

 

Question how do they test for mycoplasma? Blood, sputum, what do I insist be tested? Can we be passing back and forth? Will the antibiotic schew the test results now that she's been on for four days?

 

 

Strep keeps showing negative. Could it be new kids at new school? (Small only 40 kids) considering homeschool at this point as it's been too hArd in her system.

 

Anyone have GOOD doctors in bay area thAt are proactive in treatment protocol?

 

On wait list for July for Stanford PANS clinic

 

Seeing Amy at North hill integrative in Petaluma who has a pandas kid and is Pandas director there next week will discuss possible Lyme, etc. which we've not broached either.

 

Should i have new animals tested ?

 

Any guidance HELP! Or assistance is much appreciated!

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I would have Amy do the mold urine test she mentioned at the conference. We had mold issues from "behind" the wall that had collapsed my DS tubes just months before we started with PANDAS onset.

 

Rashes are usually the body pushing something out because detox pathways are overwhelmed. Did you keep same beds and pillows from Seattle?

 

I would eliminate Dairy since it supports bacteria and grains too to see if that makes a difference.

 

In regards to the Rheumatic Fever its all the same molecular mimicry just different organs.

 

I always tell new Dr.s we have Rheumatic Fever of the Brain. Just the name PANDAS sounds like a joke inviting controversy.

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Rheumatic Fever of the Brain sounds soooo much better than PANDAS. My son's pain and headachache levels have finally gone back down to the levels that he was at before he did the IVIG treatment. I'm hoping these will go down even more because he has asked if he has to go back for another treatment. Our doctor said we might not see any major improvement until after the 4th treatement, which is a bummer. For an older kid that's been sick for so long, he is wanting instant relief. My son has never resisted treatment but going through more misey to get relief may become a challenge. Has anyone else had this problem? How did you keep pushing though it?

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