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Update on Gaby s/p PET scan


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Well, I'm stumped again. I was sure that this PK PET scan would show brain inflammation based on the fact that she is still talking nonsense all day long. She will answer appropriately if you push her, but prefers to ramble on about irrelevant things (sometimes in a format that is grammatically incorrect). Had the scan on Tuesday and was told it was "normal" - no signs of inflammation. They couldn't show me anything since it's part of an investigational study. I do have an appt. scheduled with the doctor who does this study on May 14 so at that time, I might be able to actually see the scan results and talk to him in greater detail. In the meantime, I don't know what this means. Did the IVIG get rid of the inflammation, but the behavior she has now (which includes interrupted sleep from 2AM to 6AM) is it due to permanent damage to the neurons and I will expect her to be like this from now on? The doctor I spoke with (who is just a colleague of the doctor running the study) could not give me any answers - she said I may need to talk to psychiatry - not what I wanted to hear. I mentioned to her that I was considering 5Htp/inositol (which the DAN doc in Florida had recommended for behaviors and sleep). She said she had never heard of 5HTP or inositol. She wanted to know what 5HTP was. (Can't believe that since it's a neurotransmitter and she's a neurologist). Anyway, she said that she doesn't hold a lot of stock in what DAN docs say because she thinks they practice on the "fringe of medicine".

 

I picked up some 5HTP at Whole Foods yesterday and I saw on the bottle that it has a warning about giving to kids under 12. Since its the weekend, I can't call the doc. Has anyone else had any previous experience with 5HTP and if so, how old was your child? Pat

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Hi. I am totally new to this, but, we saw a psychiatrist who is knowledgeable in pandas (with our dd), and she indicated that most medical tests (titers, mri, etc) have been unreliable for pandas patients.

 

I hope you have good news soon...

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I started giving 5 HTP to my duaghter right before she turned 11. I give her 50mg/day. I have not noticed any side effects at all. It can make some people sleepy, so it may be best to give at night.

 

 

How old is she now? What benefits have you seen? How soon before you noticed any difference? I found the information from the doc in Florida and he says to start with 50 mg/day, then 50mg twice daily and increase until at 200mg per day. Then after 2 weeks start inositol.

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She is almost 13. She has had PANDAS since she was 5, but 3 days before she turned 11, she had an abrupt onset of severe intrusive thoughts which she had never experienced in the 6 years of PANDAS. At that time I started her on Inositol and 5 HTP, so I can't say for sure which one helped the most, but after a few days her intrusive thoughts were much better. After a course of antibiotics (at that point I don't think we had tried Azithromycin, so it was probably Keflex) they were completely gone. I am going to up her to 100mg of 5 HTP. YOur DAN said up to 200mg/day. She was recently weighed and weighs about 130 lb., so I unfortunately have not been giving her enough.

Colleen

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She is almost 13. She has had PANDAS since she was 5, but 3 days before she turned 11, she had an abrupt onset of severe intrusive thoughts which she had never experienced in the 6 years of PANDAS. At that time I started her on Inositol and 5 HTP, so I can't say for sure which one helped the most, but after a few days her intrusive thoughts were much better. After a course of antibiotics (at that point I don't think we had tried Azithromycin, so it was probably Keflex) they were completely gone. I am going to up her to 100mg of 5 HTP. YOur DAN said up to 200mg/day. She was recently weighed and weighs about 130 lb., so I unfortunately have not been giving her enough.

Colleen

 

Colleen,

since your daughter has been on inositol & 5HTP, as well as antibiotics, she should be doing pretty well right now? Also she is now at puberty which they say is the time that a lot of the kids outgrow this - what are you seeing with her? thanks. Pat

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Pat,

We have used it. I agree, at night is best. Our son is six. I did not see any negative side effects from it except that when I gave it during the day he had less of an appetite at lunch. Night is best, and I always gave it with a snack.

 

I am not currently using it. As you know we are not Pandas over here, and now I use benadryl dye free capsules for times when he has trouble settling down to sleep. I have found that the benadryl works best, and we have tried inositol, GABA, 5HTP, magnesium.

 

I have read about histadelia and think that our son must fall in that category (the multiple allergies and the use of an anti histamine= relief). I just thought I would throw that out there FWIW. Night wakings were common for us a few years ago, as was rare sleep walking. Now he sleeps 10-12 hrs at night. When he gets exposure I see sleep problems re-appear, also when he is under anxiety or stress and his mind is really racing.

 

 

 

Caryn

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Pat,

She has her ups and downs. She appears to be going through puberty, but the hormones have not all kicked in as she has not yet begun menstruating. The biggest mistake I feel I made with the treatment of her PANDAS, was not keeping her on prophylactic antibiotics, thus allowing her to be infected too many times with strep. She has been on prophylactics since October, with a short break here and there when she was vomiting with a virus. She recently had an ear infection while ON Zithromax and had a big increase in symptoms (mainly tics) that has not yet subsided. We have had tons of illnesses in our house with my other 3 children,including strep, so she is constantly been exposed to stuff. I do feel that her immune system IS stronger now than it has ever been throughout the course of her PANDAS. I pray she outgrows it and that there are no lasting effects, but the jury is still out on that one.

THAT is why I am such a proponent of antibiotics. When this all started in 2001, I knew nothing of what I know now. I am trying to treat my younger children's PANDAS a little more aggresively, but who knows?

Colleen

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Pat,

She has her ups and downs. She appears to be going through puberty, but the hormones have not all kicked in as she has not yet begun menstruating. The biggest mistake I feel I made with the treatment of her PANDAS, was not keeping her on prophylactic antibiotics, thus allowing her to be infected too many times with strep. She has been on prophylactics since October, with a short break here and there when she was vomiting with a virus. She recently had an ear infection while ON Zithromax and had a big increase in symptoms (mainly tics) that has not yet subsided. We have had tons of illnesses in our house with my other 3 children,including strep, so she is constantly been exposed to stuff. I do feel that her immune system IS stronger now than it has ever been throughout the course of her PANDAS. I pray she outgrows it and that there are no lasting effects, but the jury is still out on that one.

THAT is why I am such a proponent of antibiotics. When this all started in 2001, I knew nothing of what I know now. I am trying to treat my younger children's PANDAS a little more aggresively, but who knows?

Colleen

 

Colleen,

I pray that your daughter makes a complete recovery soon and I have a feeling that she might once she starts menstruating. Many kids are starting a lot earlier these days and she is already 13 - which seems late for this day and age. I'll bet once she does, though, it will make a world of difference. Keep us informed. Pat

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Pat,

Thanks. I will definitely let you know. I am starting to wonder why she has not started menstruating yet. She will be 13 in 5 months and I was 11. I don't kow any PANDAS girls her age to see if this may be the norm with them. Does anyone know? She would die if she knew I was talking about this :)

Colleen

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Pat,

Thanks. I will definitely let you know. I am starting to wonder why she has not started menstruating yet. She will be 13 in 5 months and I was 11. I don't kow any PANDAS girls her age to see if this may be the norm with them. Does anyone know? She would die if she knew I was talking about this :)

Colleen

My daughter is 14 1/2 and still has not started...But I think its as they near 100 lbs. We really have had to work at getting my daughter up to 85lbs. She seems to fluctuate between 80 to 85. But last year we were stuck 73 to 78 so there has been progress.

 

Pat, why do you say menstruation will make a world of difference? How does that change things? I've been worried that starting her period would just trigger more episodes- I certainly get more irritable with mine.

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Pat,

Thanks. I will definitely let you know. I am starting to wonder why she has not started menstruating yet. She will be 13 in 5 months and I was 11. I don't kow any PANDAS girls her age to see if this may be the norm with them. Does anyone know? She would die if she knew I was talking about this :)

Colleen

 

I would probably check with the pediatrician on that. It is pretty unusual because girls are now younger than years before when they start and 11 seems to be the norm with a few at 12, but very seldom after 13. Since our milk has more hormones in it than years before, most girls start puberty younger than ever, developing breast tissue at a younger age, body odor and menstruation also at a younger age.

 

On another note - regarding the 5HTP. I have given it for the last 2 nights and I don't know if this is just coincidental or as a result of giving it, but I am getting almost a paradoxical response. She would wake up after only 2 hrs of sleep (usually she always lasts at least 4 or 5 hrs. before waking), then after that she slept fitfully (for only very short periods) but most of the time awake and complaining of not being able to sleep - dry mouth, etc. Has anyone had any experience like this?

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Hi Peglem and all...puberty might influence PANDAS in girls (hopefully favorably) due to estrogen's effect on the TH1 vs TH2 immune response:

http://www.ingentaconnect.com/content/ben/...10?crawler=true

 

This is just a theory of mine. I know of no actual studies/data to support this theory. Pregnancy might have an even greater (but I suspect temporary effect). I also wonder if birth control pills (the kind that "trick" your body into thinking you are a little pregnant) might have a beneficial effect if puberty doesn't do it.

 

I do wish Swedo (or someone else) would actually publish something with information on how these kids do (depending on treatment) long term (adolescence and adulthood). Some docs seem to conjecture that our kids will grow out of PANDAS but that seems unsupported by any scientific documentation. We also don't know what "baseline change" occurs even if their symptoms do become less severe as they enter adulthood.

 

Also, as kids get older they become less suspectable to strep which also helps. This is true for boys and girls.

 

I don't know what effect puberty would have on a boy with PANDAS.

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I too have wished that someone would say SOMETHING about the long-term prognosis of this thing!

 

From my own experience: In hindsight, I feel that I may have had PANDAS myself. I suffered terrible, irrational feelings of guilt through my entire childhood, and also had a verbal tic. I continued to suffer emotionally through my twenties, and the diagnoses I received (bipolar, etc.) never totally made sense to me, so I disregarded them.

 

Long story short: I was completely CURED by pregnancy.

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