Conversion Symptoms?

[GatsMom]

Friends - here's a brief update: We switched my dd from the augmentin to zithro and she has been on it for 6 days. She is SO MUCH better today...like night and day since last Tuesday, I can't believe it's the same child. When my child has had such a hard relapse it really shakes my faith in this entire thing. I question whether this really is treatable, if she is just plain insane and that's the way life is and I should stop deluding myself, and I lose all faith. But then to see such a change and the only thing that is different is abx restores my faith and hope that this is treatable and that I have to keep on fighting and trying until this is a distant memory. Thanks to all of you on this forum, I'd be lost without you!!!

 

Such good news!

[peglem]

Thanks so much for updating us! What wonderful news!

[coco]

OK Friends - just got dd's ASO and DNASE tests back today after a really rough patch: ASO was 299, should be <150. DNASE was 480, should be <170. On a brighter note, her IGG is now in the high-normal range after failing 6 months ago and she is now robustly high on 8 of 14 pneumnococcal strep 14 when she failed 13 of 14 four months ago. Our problem is break-through strep and we are convinced it is intracellular. We are repeating the Dr. K dose of 1.5 grams per kilo next Wednesday, and if no gains are made we will do IV abx to try and wipe this out.

[faith]

Thanks for the update. Is your daughter still having symptoms tho? or has that gotten better? did these titers seem to spark any symptoms or no?

[coco]

Thanks for the update. Is your daughter still having symptoms tho? or has that gotten better? did these titers seem to spark any symptoms or no?

She's better after being on the Azithro now for a week...yes the titers ignited the symptoms very badly.

[faith]

just to clarify, you mean the symptoms you mentioned on the first post of this thread right? then you said on the 24th she was much better after the azith? right? she's been better since?

[kg5123]

I have a strong conviction that being hot or sweaty is closely related to a defect in thyroid function.

About one year ago, my 15-year-old Japanese son had severe vocal tics accompanied by a feeling of hotness even in the middle

of winter. A tic doctor advised us to see a thyroid doctor His TSH (thyroid hormon) reading showed he has had acute thyroiditis.

The thyroid doctor prescribed β blocker for the son. His sweaty conditions (hot) eased quickly and his tic symptoms also shifted

to mild levels. Combing through literature, we found a document that says that low IGG sometimes causes autoimmune problems

including mulfunction of the thyroid system. My son also had low IGG and failed on most of 14 pneumo titers, which provided a reason for

monthly IVIG. He has been in a fairly good condition in the past year, aided by monthly IVIG at Dr. B's office. I believe that

β blocker can be a quick fix for thyroid problems like being hot. So, I strongly recommend any patient feeling hot should take

TSH readings. I think being hot is also part of various PANDAS symptoms, which basically result from autoimmune problems including

thyroid mulfunctioning backed by low IGG.

[coco]

just to clarify, you mean the symptoms you mentioned on the first post of this thread right? then you said on the 24th she was much better after the azith? right? she's been better since?

yes, better since the symptoms on the first post of this thread.

[Debbie1]

Hi coco,

 

I am confused as to why IVIG has not lowered the titers. Its a bit concerning to me because my children all have high titers which have come down tremendously but never into the normal range. We are still having symptoms, although milder than when titers were higher. We are currently considering IVIG for at least one of our children, but I was under the impression that IVIG will bring the titers into the normal range. Is that incorrect?

 

Debbie

[coco]

Hi coco,

 

I am confused as to why IVIG has not lowered the titers. Its a bit concerning to me because my children all have high titers which have come down tremendously but never into the normal range. We are still having symptoms, although milder than when titers were higher. We are currently considering IVIG for at least one of our children, but I was under the impression that IVIG will bring the titers into the normal range. Is that incorrect?

 

Debbie

I think the IVIG did lower her titers. Here's the puzzle...before we did anything to treat pandas -- no abx, no steroids, no ivig -- her DNASE was 960 and her ASO was 295, and she was not in the middle of what we would call an intolerable period, but we were coming off one when we tested. Fast forward to about 10 days ago and she got really bad again suddenly...then switched to azithro and better now. Dr. B feels the ivig is doing the job, but she was once again exposed and the augmentin was not strong enough to protect her and she had break-through strep. Even though the ivig is strengthening her immune system, she is still not strong enough yet to fight off an infection. (Her IGG levels now are at the highest end of normal and her pneumo strep 14 looks much, much better since prior to any ivig treatments, failed 13 of 14) We are about ready to try IV ABX as a next step prior to or after our next ivig to see if it can be beaten into submission. It's hiding in there somewhere. (My dd has had this since about age 2 and we started treating this summer, age 9.) Still waiting for my and hubby's results to make sure we are not reinfecting each other.

[lboll]

My dd went to bed normally as usual tonite about 9:00 and fell asleep within 15 minutes. At 11:30 I heard her in her bedroom laughing hysterically very loudly (I call it the "bats in the bellfree" laugh that she had prior to any pandas treatment -- still haunts me), she was speaking nonsense...I thought she was dreaming. I went in to check and she was wide awake acting completely bizarro. I told her to go back to sleep and that it was very late. She proceeding to continue with the laughing, made up words, potty talk, screeches, squeaks, banging the wall with her foot, occasional "what are you doing, mom?" This continued for over an hour and a half. She has not been like this since last summer at her worst. She then said she was "hot" and came out here to the sitting room where I am. She was all sweaty and flushed and drank a huge glass of water. She seemed pretty lucid, and watched a bit of tv with me. She went back to bed about a half hour later and is sleeping soundly. I had posted a few days ago after reading some threads where kids complained of being very hot as they were perhaps close to or going through conversion. My dd10 has had 5 ivigs treatments and for the past month has awakened in the middle of night very sweaty (she is in light cotton pjs and regular quilt) or in the mornings with that matted damp hair. This has now happened for the 5th time in the last month. "Conversion" is one of those funny words to me in all this...a bit ethereal, and not something that I have read much about. Have any parents further up the chain seen this as their children's brains were healing?

 

 

I just read through this post after just posting a question that was similar. My son is waking up at night. He is moving furniture around in the house and running back and forth, back and forth. He is turning bright red and his heart is racing. He has me so worried. I keep wondering if I should continue the treatment or not.