pmoreno

Amy, I am so happy for you. I pray that she will continue to do well and that this nightmare is behind her. Pat

I don't know what the exact reason for the improvement at puberty, other than that the hormonal changes (from what I understand in boys and girls) cause an improvement in symptoms.

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?

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

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

Isn't it amazing that there are so many people in the medical field who just dismiss all the evidence on this disease. I've recently seen a neurologist (who has had limited PANDAS experience) and tells me that alternative docs (DAN docs who seem to have more PANDAS experience than mainstream practitioners) are practicing on the fringe of medicine. What is your specialty, by the way? At this point we have had the best advice from a DAN doctor in Florida who is well known and has patients from all over the country and many from outside of the country too. It's true that there is no known actual cure for PANDAS at this time. There are a few things that have been successful for a large number of kids, but not 100% for all. Others on here have mentioned them - IVIG, plasmaphoresis and long-term antibiotics. In the meantime, while you decide which route to go, you obviously want a little respite from the movements and sleep disorder. The DAN doc wants us to give our daughter 5HTP starting with 50Mg daily, gradually incrementing with an additional 50Mg (always given BID) until reaches 200Mg daily over about 2 weeks, then starting inositol in combination with the 5HTP. When she recovers from her current upper resp. infect., I am going to start this (didn't want to do it while she was sick because it's hard to judge if something is helping or not if there are other variables to consider). You may know that 5HTP is a neurotransmitter (a precursor to serotonin). I don't assume that you know this because the neurologist I saw (amazingly) did not know this. You would think that someone who specializes in that field would at least know this, even if they don't use it in their practice. I don't know why main stream medical practitioners are so adament about using meds (that many times have horrible side effects) instead of trying natural products that don't have the side effects and have a pretty good track record of having equal success to standard meds. My daughter had some wave-like movements at the onset of her disease 1 1/2 years ago (but I guess I just called them tics). It would be a smooth movement of her arm to her hand, forming her hand into a C shape. This occurred over and over for a period of time. She lost all symptoms for about 3 months last summer, but this particular movement returned when her symptoms came back late summer. After IVIG they went away immediately and completely, but the OCD part of it had gradually returned and is still part of her getting better and worse at various times. Her cognitive impairments have remained. She functions about 1 to 2 years behind her age group academically. You mentioned a funny sore on the foot of your child - could it be a plantar's wart? For some reason, (related to their dysfunctional immune response) these kids seem more susceptible to viruses too, and of course, warts are viruses. My daughter had several warts on her toes prior to the onset of her symptoms. The restless legs are often attributed to low ferritin levels and my daughter did receive iron for a mildly low level, but it didn't seem to make any difference. (I believe if PANDAS was not involved and it was simply a matter of low ferritin, maybe it would help) In any case, I'm hoping that the 5HTP/inositol combination will do the trick for her. It should help with sleep (and has been known to help with OCD, decrease anxiety,etc - therefore, I would think that it might have a relaxing effect and improve tics or movements at the same time). It certainly can't hurt to try - I've not heard of any side effects yet. Good luck and hopefully you'll have a little more success because of all of your connections. Pat

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.

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

Gaby's MRI in the height of her symptoms showed nothing. This is not unusual - it rarely picks it up. CT's don't show anything. She had a PET scan done yesterday - am anxiously awaiting results. This is a new procedure that picks up the areas of inflammation in the brain. They inject a chemical into the IV which binds to the areas of the brain that are inflamed and they light up when the scan is done.

At the onset of Gaby's PANDAS she used to talk about seeing a green iguana who was mean (in addition to the white lights - who she said were actually people). She also saw ghosts and was very fearful about falling asleep. This sleep anxiety and preoccupation with ghosts or iguanas has not returned since it went away over a year ago. As I've mentioned before, the symptoms can change so dramatically in the kids from episode to episode and even sometimes within the same episode. I think it has to do with the particular neurons in the brain that are being affected at that time. As the brain heals over weeks and months, some of those behaviors get better or go away and as new damage is being done (either through strep or other antigens - like viruses, vaccines, etc) new areas of the brain are affected so you see new behaviors and sometimes the same areas as previously will be affected and you might see repeated behaviors from the past.

so in conclusion, I would say that PANDAS can affect any child (whether bright and precocious early talkers or those with language delays, etc)

For anyone who thinks there's no downside to a T & A, you have to remember that it is still surgery. There are always risks associated with that. Although I had briefly considered this for my daughter (she has enlarged adenoids), after much research I have concluded that it is only indicated in a small number of cases. If the child has enlarged tonsils or adenoids and the strep is being harbored there, so much so that regular courses of antibiotics can't clear it up, then it would make sense to go that route. I think that's pretty rare though and I have read that many kids after having T & A end up with strep again because it doesn't guarantee that they won't get it.

It probably wouldn't be worth your while to get a repeat ASO at this point. They can stay elevated for a time so you may not see a change anytime soon. If your son reacts only to strep, you should see a big change after being on Azith for a while. However, if his immune response is over the top to other antigens as well, such as viruses (which my daughter's is), then you may see a positive change initially with the azith, but when exposed to these other antigens (antibiotics do nothing for them), then you may see some decline again. Many parents here get upset after using various antibiotics (including azith) getting good results at first, and then they see behaviors creeping back in. It's not that the abx have stopped doing their job. They probably are still fighting the strep - it's that these other antigens have come into the picture too at that point.

well, I have to burst that bubble. Gaby, along with her twin had a speech and language delay which prompted me to have them evaluated at about 18 months and they received speech therapy. Gaby's was a little bit worse than her twin's.

As I have mentioned in previous posts, Seeing bright lights (or white lights) especially at night, was one of the first symptoms that Gaby exhibited when all this started for her 1 1/2 years ago. The mention of bright lights eventually went away (after a few months), but returned last December and remained for about 3 months with increasing problems, ie. seeing the white lights in school and suddenly yelling out and hitting at them in the air and getting very angry because they bothered her. This has stopped again (thank goodness) as of about a few weeks ago. Pat

Has anyone here every tried threelac to treat yeast and are there any bad side effects for children? Pat

Sigh - here we go again - Since Gaby caught this minor cold (and I do mean minor) she's just sniffling a little - usually at bed time and she was coughing yesterday - not today. She has gone back to major anxiety about everything. She'll look at me with a worried look and say "I think you only like cats" and she's tearful about it. - Have no idea what that's all about. We don't have cats and I'm not really a cat person - I'm allergic to them. If she gets up in the middle of the night to use the bathroom, she won't go unless I go with her. She sleeps with her arm over me to sense if I might get up. She wakes up around 1 or 2 and stays awake most of the rest of the night. As long as there are viruses out there - it seems that she's never going to get over this.

Brian - I'm so sorry that you guys are having so much trouble with these docs. Have you considered trying Children's Hospital in Detroit again? I know that you had one bad experience, but not all of these docs are the same. The female associate of Dr. Chugani was supportive (even though not very knowledgeable), but she works closely with Dr. Chugani (who is harder to get in to see) and she made this PET scan possible for us. Why don't you try getting an appt.? Pat

I will add that Gaby has never had an accident (either urinary or bowels) since she potty trained around 2 1/2 - 3 years old. However, a few weeks ago, she was playing in the living room and she was incontinent of urine (a large amount). She didn't even seem that upset about it - normally she would be running to make it to the bathroom. I don't think its a physical thing - I think their brains are out to lunch and they just aren't thinking clearly. If they have trouble dressing, eating, concentrating in school - why would it be surprising that they would sometimes lose the ability to sense that they have to go to the bathroom.

On another thread (can't remember which one now) just mentioned their child being on antibiotics with good results first few days, then a return of symptoms. They wondered about possible virus in addition to strep. I think that's entirely possible. Gaby has been doing really well (as I had just posted) for the last few weeks. (She has been off school for winter break for 9 days) As I mentioned, she was communicating quite well - you could have a meaningful conversation with her and could read a book at bedtime with her listening and concentrating. Well, she went back to school Monday and today (Tuesday) she comes home with a cough and all of a sudden she is talking constantly (just nonsensical things - hard to keep a train of thought) and not paying much attention to when she's read to again. She tells me things like - I don't want to be a cuckoo head again. I don't see any strep symptoms - think it's just viral - but just goes to show that anything can set off an immune response & odd behaviors. Pat

Amy, I was wondering what how old your dd is and what the weight is? My doctor gave us the methylprednisolone at 16mg/3 tablets daily for 5 days. We have not done it yet, but after reading your post, I'm wondering if this is high. My dd is 9 almost 10 and weighs about 89/90lbs. Thanks, Linda Linda, Gaby also had 1 mg/kg of bodyweight daily for 5 days. That is a little more than what your daughter was prescribed so I don't think the dose is all that high. I think it's just a matter of how a particular child reacts to steroids. They generally make you pretty hyper so if that child is having symptoms that are already somewhat aggressive or anxious, it's possible that it could exaggerate that kind of response. I remember that when Gaby took her steroid burst it was during a time when she was very spacey and uncommunicative. She wasn't aggressive - she was quiet and very introverted - you could barely get her to tell you anything. She looked like she was half asleep most of the time. After a few days of the steroid burst - she suddenly came home from school one day talking a mile a minute - you couldn't stop her. Pat

sorry, that was vermox not vermex. the generic name is mebendazole. I gave her a dose at midnight because she woke up at that time (and stayed awake most of the night). Apparently it kills the adult worms right away but it takes 5 to 7 days to kill the eggs (which is the part that makes them the most itchy. She looked pretty uncomfortable this morning. I feel guilty sending her to school because she hasn't slept much. Also its important to clip the fingernails really short during that time and to wash the sheets, towels & all clothese every single day for at least a week.Additionally it is more important to bathe them (or at least wash thoroughly with a washcloth in that area) in the morning versus the evening because in the morning is when the eggs are likely to be there.

I took Gaby in to the MD today and she checked her bottom. Right around the anus it is a little inflammed - reddish which is consistent with the constant itching, scratching. Although I am going to continue with the natural remedies for a while, I think I will take the doc's advice to treat with (I think she said vermex) which she called into the pharmacy. It's one pill today, then another one in 2 weeks when the eggs might be hatching. I think I will check for them tonight before actually giving her the pill (I'll give it to her tommorrow morning). The way to see them (according to the doc) is to wait until the night (the later the better) - apparently first thing really early in the morning is best. You get a flashlight, pull off the covers in a hurry, pull down their jammies and shine the flashlight on their bottom and you should see a few white thread-like worms as they like to exit at that time of the night. The itching comes from eggs that are deposited outside around the rectum when the worms come out. Another method to check for them is to take two-sided sticky tape and place it in the crack of their bottom. As the worms exit, they will get stuck to the tape and you will see them. The pill she prescribed will get rid of them pretty fast, but I think that if they're prone to getting them, the natural remedy would be a good thing to do for a while in addition to make sure that the cycle doesn't repeat itself. Apparently this is fairly contagious in a household - not so much in school. The reason being that the worms can come out (or maybe its the eggs) and actually live on the bed sheets or clothing and if you have more kids who are rolling around on the bed - the other thing is that as the kids scratch themselves (and don't wash their hands afterward) they tend to touch things, including food in the refrigerator while they're grazing. If you have nail biters (like Gaby) they put their fingers in their mouth and ingest the eggs that are under their nails from scratching and the cycle starts over with the eggs maturing in the intestinal tract.

I did find something similar in the health food store, but it's more expensive and doesn't give recommended dosing instructions for children - also contains a few more ingredients, so I am going to go with the Clarkia brand that I found on line. In the meantime, I did give her some fresh ground cloves yesterday and I made a paste of crushed pumpkin seeds and honey. I also added some honey roasted sunflower seeds for texture and formed it into a little granola bar. I have to say that it was very tasty. It's probably quite nutritious besides effective against gut parasites. Having read a little more on the subject, apparently most people have a fair number of these in their system - children having more than adults because of their poorer sanitary habits (ie. washing hands before eating, etc) But kids with immune disorders seem to have more than the average person (something about low levels of zinc - which is probably why the pumpkin seeds are effective - they're supposedly high in zinc and this is deadly to the parasites). In any case, several of the sites I went to recommend doing a parasite cleanse twice a year for children - it helps with proper digestion, decreased complaints of stomach pains, bloating, gas, and more efficient functioning of the immune system (since most of it is located in the gut). So even if there is not an actual pinworm infestation - which is where the itching comes from - it would still be a good thing to do this twice annually to help the gut and immune system function better. Since the 3 main ingredients in Clarkia are natural (cloves, walnut hulls and wormwood), they are safe for kids to take and according to the directions I saw on line, you start with a couple small doses and gradually work up over a 3 week period - then you're done.