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Conversion Symptoms?


coco

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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?

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How old is your dd? I think your post is intersting. My PANDAS son never did anything like that but my 8 year old non-PANDAS osn had a streak of "waking up" moaning, I want to say screaming but not really screaming, complaining, crying, etc. I would even pull him out of him bed and sit on the coach with him. One turning on the tv. He'd calm down and I 'd put him back in bed. In the morning, he wouldn't remember any of it. For him it was like a phase. He had clustered incidents of it spanning over a week or so then stopped out of no where. It's been months since that happeed. Side note, he used to have nigt terrors as a toddler.

 

He'd go to bed around 8 and have this happen around 10-10:30 pm.

 

Does she remember any of it in the morning?

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Our son has complained of being hot too. Recently he wanted to sleep with his PJs off. We have also had two times of sleepwalking........ he has never done that previously. I would also say his coughing TIC has changed, it comes in jags for several hours and then the next day he has no coughing. He says it feels like he has something in his throat that he needs to cough up. It sounds similar to cough at the end of a cold.

 

-Wendy

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Hello

 

These all sound like night terrors too me.. the link below describes it quite well.. both night terrors and sleep walking are parasomnias. My dd6 has a lot of night terrors during epsidoes and some out of them if she has even a very low grade fever... you know the sort - the ones that mom's hand can feel that, radiant heat stuff, but use the thermometer and she seems in normal range.

 

Ibuprofen at bedtime seems to do the trick if she's slightly hot at all... then she won't have a night terror then.

 

Nothing worked during an episode though, to stop them.

 

http://holisticonline.com/remedies/sleep/s...eep_walking.htm

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My dd is 10. I did not even mention it to her this morning and she didn't to me either. It was hard waking her up for school today. Nothing bizarre this morning, however, she always eats a big breakfast (and had been doing so since our first ivig in August, prior she had a lot of food aversion issues) but this morning she maybe took 4 bites of an egg sanwich which took her 15 minutes. I tried giving her a chocolate munchkin and she took almost another 10 minutes to eat just half of it. It looks like what she was doing prior to starting any treatments....picky mouse bites. I hope and pray this is not starting all over again. I spoke to Dr. B this morning about this....he was a bit stumped...we spoke about hot flashes, sweating, fevers, etc., and he and I "theorized" that since this has happened for the 5th time in the last 5 or so weeks, that the body is reacting to an infection "strep" and attempting to eradicate it. IVIG stirs the good and bad antibodies and the bad are not going down without a fight (?) But her behavior has been generally a lot better after ivig#5 except for last night's 90 minute tirade....could be part of it. Bottom line, I call him again on Thursday to provide another update and we go from there. :unsure:

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Our son has been complaining of "sweating at night" and being too hot in his bed at night lately, also. He's never had IVIG, though; just high-dose abx. Frankly, I thought it was more likely hormonal than associated with the PANDAS, but maybe it's all mixed up in the same bag? He had me drag out the fan we use in his room during the summer months and plug it in last night! Slept happily and didn't complain this morning for the first time in nearly a week! :unsure:

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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'm unfamiliar with the term "conversion" as used in this group but I can tell you in the DAN! world laughing in their sleep and temperature issues mean yeast. Those moms wouldn't bat an eye at it, would immediately label it candida overgrowth. We saw it a lot in my son during his middle school backslide and sure enough, it and many symptoms went away with antifungal therapy. He's not autistic but that condition also deals with inflammatory and BBB issues and I garnered much good information from those genius parents. Best wishes.

Gat's mom.

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Dear Gat's Mom,

 

I am just about to start tackling the yeast with my ds12. He just had IVIG 30 days ago and has been on high dose antibiotics for 3 months. I have a DAN dr. that I am working with, but he is so aggressive. He is used to treating yeast with kids that are autistic. My son is not autistic, but I guess yeast is yeast is yeast.

 

I am afraid to do the anti-yeast treatment that it will do something to his brain that I can't bring him back from. Does that make sense. I know I have to tackle the yeast but even when I have just tried small doses of pro-biotics my son really has a backslide, which I'm sure is from the yeast and I probably just have to ride it out.

 

I just feel like it is so inhumane. He has struggled so much with this healing process from the IVIG, Old OCD behaviors are storming back at him, cycling throught and then going out. It is so frightening for him that I feel like I need ot give him a rest, but then I'm afraid if I do, he will suffer from all this candida.

 

The DAN doc wants to do anti-fungals, biofilm, you name it, he wants to throw it at his gut.

 

Can you offer advice from the perspective of a PANDAS child and yeast?

 

Thank you,

 

MomtoCole

 

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'm unfamiliar with the term "conversion" as used in this group but I can tell you in the DAN! world laughing in their sleep and temperature issues mean yeast. Those moms wouldn't bat an eye at it, would immediately label it candida overgrowth. We saw it a lot in my son during his middle school backslide and sure enough, it and many symptoms went away with antifungal therapy. He's not autistic but that condition also deals with inflammatory and BBB issues and I garnered much good information from those genius parents. Best wishes.

Gat's mom.

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my daughter has been complaining all week (since we started the omnicef) that she is hot and needs a cold glass of water... I just started to keep a journal o I have something more concrete for the drs but I do believe that the hot flash does have something to do with the healing or the battle... she also is still running a lowgrade fever 99.1 - 99.8.... she has been on the omnicef for 7 days... we have also seen her symptoms improve for a few days only to get worse and then a little better... it is hard to sort it all out! My daughter also has waking issues - she often wakes completely terrified...

 

can someone explain the yeast connection to me and what it means if there is an overgrowth and how you know....

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Dear Gat's Mom,

 

I am just about to start tackling the yeast with my ds12. He just had IVIG 30 days ago and has been on high dose antibiotics for 3 months. I have a DAN dr. that I am working with, but he is so aggressive. He is used to treating yeast with kids that are autistic. My son is not autistic, but I guess yeast is yeast is yeast.

 

I am afraid to do the anti-yeast treatment that it will do something to his brain that I can't bring him back from. Does that make sense. I know I have to tackle the yeast but even when I have just tried small doses of pro-biotics my son really has a backslide, which I'm sure is from the yeast and I probably just have to ride it out.

 

I just feel like it is so inhumane. He has struggled so much with this healing process from the IVIG, Old OCD behaviors are storming back at him, cycling throught and then going out. It is so frightening for him that I feel like I need ot give him a rest, but then I'm afraid if I do, he will suffer from all this candida.

 

The DAN doc wants to do anti-fungals, biofilm, you name it, he wants to throw it at his gut.

 

Can you offer advice from the perspective of a PANDAS child and yeast?

 

Thank you,

 

MomtoCole

 

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'm unfamiliar with the term "conversion" as used in this group but I can tell you in the DAN! world laughing in their sleep and temperature issues mean yeast. Those moms wouldn't bat an eye at it, would immediately label it candida overgrowth. We saw it a lot in my son during his middle school backslide and sure enough, it and many symptoms went away with antifungal therapy. He's not autistic but that condition also deals with inflammatory and BBB issues and I garnered much good information from those genius parents. Best wishes.

Gat's mom.

 

Hi MomToCole,

 

The DAN!s go after yeast hard which I believe has merit BUT only if the child can tolerate it. If yours doesn't tolerate a probiotic well, it would be my guess that he would struggle with natural or rx antifungals. I see the word "sawtooth" written on this board and I'm not sure but think it may have a similar meaning to a herx reaction or a healing regression. The latter two are the terms used to describe the heightening of symptoms when a new medication or supplement is added. Some folks actually view them as a good sign, I'm not so sure. I think that when the right meds/supps are added at an appropriate dose the patient should feel better, not worse but I could be wrong about that. In my son's case, he never suffered because of the addition of natural and rx antifungals or kefir to his diet. The battle hymn in the DAN! world seems to be "low and slow" wrt adding new meds/supps. Maybe you need to start very low and slow with your son. Have you ever looked at bodyecology.com? There are many natural food sources that are high in probiotics, perhaps thats a place to start and work your way up to probiotics, then antifungals, etc.

 

I do understand your fear about trying something new and hoping it doesn't do more damage and I'm so sorry that you are going through it. When we have our current backslide under control I will be looking much harder into the biofilm protocol. We actually did 7 days of it but he was already spiraling down and I wanted to simplify everything until he's under control again. I think there is much merit in the logic behind a biofilm as a possible explanation for the strep in our kids that requires so much more medical/pharmaceutical intervention than other kids. A strep biofilm would make sense, particularly but not exclusively, if the child has some possible heavy metal toxicity from immunizations.

 

In my view the abx, antifungals, IVIG and PEX are the guns in this war but just as important is the background game. Gut, brain, immune & emotional support are very important around here. Little things like our trampoline, epsom salts baths are noninvasive calming measures. Online video games with his friends (especially when he can't make it through a day of school) keep him grounded in his pre/post PANDAS life. He's watching a funny movie in his room right now after a very hard, disappointing day and I just heard him laugh a little...first time today. He should be doing his French homework but I think finding some joy in this day is so much more important right now. Just my opinion.

 

Remember, low and slow. See if he'll drink an ounce or two of kefir to start.

Gat's mom.

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Sadly, this is not a symptom of recovery for my dd---at least not right now---yesterday was a horrible day at school and later at home. Spoke to doc and we are switching back to Zithro today and rerunning all the blood work, including family member's ASO and DNASE. At least I know the difference between "sawtooth healing" and "exaserbation" because I have seen both now.

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I'll be interested to hear how she does on the 500 Azithro.. Our son typically responded within 48 hours of being on the higher dose.

 

-Wendy

 

She was on 1200mg augmentin. We just switched to 500 zithro today and took her for a blood draw...we are sure she she was exposed to strep. She is a bit better today, a BIT, but very high OCD.
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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!!!

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