Help! Can't figure out what's behind this

[pmoreno]

Hello all,

As most of you know, 8 year old dd, Gaby had IVIG 5 weeks ago and immediately had 80% reduction of PANDAS symptoms which lasted about 2 weeks. Then after 3 weeks, gradually some behaviors crept in like spaciness, inappropriate giggling or grimacing, etc. Prophylactic abx were started right after IVIG (augmentin), and I started wondering after 3 or 4 weeks whether she might be having yeast overgrowth (despite giving probiotics) After doing a LOT of reading from various sources, I decided to start doing some natural prevention (grapefruit seed extract drops morning and night mixed with some liquid - tastes horrible, by the way) giving at least 2-3 teaspoons of pure coconut oil a day in some form of food, at least a teaspoon of pure lemon juice a day, staying away from most sweet foods and using xylitol in place of sugar (which not only sweetens, but is supposed to have an antifungal action) In a sense I am putting her on a modified yeast free diet. Some of the yeast free diets out there are so severe, a child would lose way too much weight on them. Anyway, the last couple of days she has been worse than ever, talking to herself quite a bit, and at night it takes her almost 1-2 hours to fall asleep, even crying, hitting out at the air, the wall, herself, saying that something is being mean to her and she doesn't like it. She's also complaining of seeing floaters (little things floating around in her visual field). This is something that she had complained of last year when her PANDA symptoms were at their worst.

The interesting thing (and I don't know if this is just coincidental or not) is that this ranting and raving about people being mean and swatting at non-existing things started right after I gave her a nice warm, detox bath with epsom salt which is supposed to be relaxing. Tonight I just gave her a warm shower, and she had the same reaction right afterwards. I'm wondering if there is something related to the warmth that bothers her? I will try tommorrow night and the next night without any baths or showers at all and see if there's a difference.

 

In the meantime - I am so confused - her behaviors could be attributed to any number of things and I can't sort them out. Dr. K is still out of town so I can't ask him. Number one - it could be "turning of the pages" - things from the past, number two, it could be just plain PANDAS behavior that has not been eradicated by the IVIG as I had hoped, number 3 it could be yeast overgrowth from the antibiotics, number 4 it could be yeast die-off from everything I've been doing the last few days to kill the yeast. Any ideas out there?

 

Also I have some questions about yeast - I've seen conflicting info on the internet about allowing yogurt. Does anyone have any really good probiotics they are using? I'm not quite sure which ones are best. Also I'm hoping to get a prescription from Dr. K for some nystatin - Does anyone know how they dose this for kids? Another thing, the nystatin liquid is in a rather sweet sugar base - can't that contribute to more yeast? Or is anyone on this forum giving it in a powder form? Thanks for listening, Pat

[myrose]

Just wondering Pat if you are finished with the IVIG? I do not know much about it but what I have read makes me understand that more than one treatment may be needed in some? Also I am hoping WORRIEDDAD updates on his son. If I a correct you two did the IVIG the same time.

I sure hope things are better soon Pat.

I stopped the hot baths for my daughter. She kept complaining of feeling funny and she really did not look well either.

[amy s]

(((((hugs)))))

Pat, I'm so sorry you guys are going through this. I don't know anything at all about yeast issues or detox baths, etc. We are not there yet. My dd has been on Penicillin VK for aobut 8 months with no yeast issues. But we recently knew we were going to go with something stronger so she is now taking a Klaire Labs brand pro-biotic complex. It has 10+billion CFUs Multi-Species supplement. The probiotic in it are lactobacillus acidophilus and Bifidobacteriu bifidum. When I spoke to Dr K on the phone he specifically had me read that off to him and he thought that was adequate but also told me in addition to give a few yogurts each day. I hope someone on here can help. I hope you guys can talk to dr.K soon.

Regards,

amy s

[peglem]

My daughter takes 3 nystatin tablets each day. She weighs @ 80 lbs. I don't know if it comes in powder form or not. I would think its a pretty safe med- they give it to infants frequently, for thrush and other yeast infections.

[pmoreno]

Just wondering Pat if you are finished with the IVIG? I do not know much about it but what I have read makes me understand that more than one treatment may be needed in some? Also I am hoping WORRIEDDAD updates on his son. If I a correct you two did the IVIG the same time.

I sure hope things are better soon Pat.

I stopped the hot baths for my daughter. She kept complaining of feeling funny and she really did not look well either.

 

 

Isn't that odd that your daughter complained about feeling funny too after the baths? I think it may have something to do with the heat - I know Gaby gets overheated real quick - she sheds her blankets almost immediately at night. About the IVIG - according to Dr. K - with the dose that he uses on his patients, it shouldn't require any more than one time. Some of the other parents who post here have had it done several times, but I'm sure the doses were lower. For some reason, its thought that using the higher doses all at once instead of breaking it down into many smaller doses seems to be more effective. I'm not really doubting that the IVIG is doing something good - I just think there are other factors involved here - like the antibiotics for one (they really wreak havoc on the immune system) and with the yeast overgrowth that's just another trigger for the autoimmune response. I don't think Dr. K finds it necessary to repeat the IVIG, unless after a year (along with the prophylactic abx) it hasn't completely gone away. (He only had 2 situations like that, I believe - where they had to repeat the IVIG more than once). Pat

[EAMom]

Pat, how about Kefir?...I've read it's supposed to be even better than yogurt in regards to good bacteria etc. http://www.acidophilusyeastinfection.com/A...philus-Food.php They sell it at Trader Joe's, Whole Foods, even Safeway...

 

Are the floaters at any particular time? After the bath? could they be ocular migraines? My dd had ocular migraines during her PANDAS episode.

[pmoreno]

Pat, how about Kefir?...I've read it's supposed to be even better than yogurt in regards to good bacteria etc. http://www.acidophilusyeastinfection.com/A...philus-Food.php They sell it at Trader Joe's, Whole Foods, even Safeway...

 

Are the floaters at any particular time? After the bath? could they be ocular migraines? My dd had ocular migraines during her PANDAS episode.

 

 

Yes, I might try the kefir - wonder if they have some that is less sweet. The floaters happened earlier today, not in relation to the bath. Not sure about ocular migraines - she hasn't complained of a headache since this episode began in August. I will ask her tommorrow, though. Thanks Pat

[myrose]

My daughter takes her blanket off at night too. I am not even sure she is awake when she does it. I have to wait until she falls asleep to even put it on her. Interesting.... After a chat with the doctor on Friday she told me to stop the baths (hot ones)

Method makes an all natural bubble bath so we will just stick to those in a luke warm bath so she can at least enjoy one (she loves them) with bubbles anyway.

Hope you get answers soon. The info on the ivig you just gave me was completely different from what I have been reading. I will try and find it.....

[Buster]

Hi Pat,

 

Regarding floaters: There can be several explanations and it sounds worth a trip to the doctor to get your child's blood pressure checked and ketone level checked -- is she eating all right?

 

For blood pressure, I highly recommend checking both standing and then checking resting after 5 min. They do this for folks with heart problems, but if your daughter isn't getting enough fluids (i.e., is dehydrated) she too could be having rapidly changing blood pressure.

 

Strangely enough floaters can be low blood pressure -- it will show up as flashes or bits of light. You can also get them from high-blood pressure but they show up slightly differently. Finally there are occular migraines -- i.e., no distinct headache but rather a blurred ring that expands or widens to the edge of the eye. If your daughter can describe them better, perhaps one of us will recognize the symptom, but I'd still recommend checking blood pressure. For example, baths can actually lower blood pressure substantially, perhaps that's the effect. Does it happen more when she is lying down?

 

It turns out that our dd had something she called "ghosts" and she'd see them coming out of the faucet during the absolute worst of the episodes. I asked her about these during her symptom free time and she said they were very odd, like rainbows you see on a bubble -- sort of irridescent and yes, she was scared of them and thought she was seeing ghosts.

 

We don't know exactly what caused our dd's symptoms. The opthamalogist thought it likely that it was starvation during her whole anorexia nervosa phase. She hasn't had the symptoms since recovery and anti-biotics.

 

Regards,

 

Buster

 

Anyway, the last couple of days she has been worse than ever, talking to herself quite a bit, and at night it takes her almost 1-2 hours to fall asleep, even crying, hitting out at the air, the wall, herself, saying that something is being mean to her and she doesn't like it. She's also complaining of seeing floaters (little things floating around in her visual field). This is something that she had complained of last year when her PANDA symptoms were at their worst.

The interesting thing (and I don't know if this is just coincidental or not) is that this ranting and raving about people being mean and swatting at non-existing things started right after I gave her a nice warm, detox bath with epsom salt which is supposed to be relaxing. Tonight I just gave her a warm shower, and she had the same reaction right afterwards. I'm wondering if there is something related to the warmth that bothers her? I will try tommorrow night and the next night without any baths or showers at all and see if there's a difference.

[pmoreno]

Hi Pat,

 

Regarding floaters: There can be several explanations and it sounds worth a trip to the doctor to get your child's blood pressure checked and ketone level checked -- is she eating all right?

 

For blood pressure, I highly recommend checking both standing and then checking resting after 5 min. They do this for folks with heart problems, but if your daughter isn't getting enough fluids (i.e., is dehydrated) she too could be having rapidly changing blood pressure.

 

Strangely enough floaters can be low blood pressure -- it will show up as flashes or bits of light. You can also get them from high-blood pressure but they show up slightly differently. Finally there are occular migraines -- i.e., no distinct headache but rather a blurred ring that expands or widens to the edge of the eye. If your daughter can describe them better, perhaps one of us will recognize the symptom, but I'd still recommend checking blood pressure. For example, baths can actually lower blood pressure substantially, perhaps that's the effect. Does it happen more when she is lying down?

 

It turns out that our dd had something she called "ghosts" and she'd see them coming out of the faucet during the absolute worst of the episodes. I asked her about these during her symptom free time and she said they were very odd, like rainbows you see on a bubble -- sort of irridescent and yes, she was scared of them and thought she was seeing ghosts.

 

We don't know exactly what caused our dd's symptoms. The opthamalogist thought it likely that it was starvation during her whole anorexia nervosa phase. She hasn't had the symptoms since recovery and anti-biotics.

 

Regards,

 

Buster

 

 

 

Hello Buster,

I checked Gaby's BP and it was about 78/52 - pretty close both sitting and standing. However, I have an adult cuff and since it is larger I would expect to get a slightly lower reading anyway. I don't think that she's dehydrated because I push various juices and mineral water on her throughout the day. She eats anything I put in front of her and I give her only organic chicken, fresh vegetables like broccoli, asparagus, kale, spinach, brown rice, oatmeal, sprouted bread with sunflower butter (since peanut butter has high mold content and if she does have yeast - we have to avoid that for now), I give her fruit juices that are mixed with vegetable juices, coconut milk, sunflower seeds, brazil nuts - things like that. She eats well and drinks well, takes extra vitamin C, E, zinc, fish oil and a good multivitamin. I thought it was related only to the baths, but now I have to rethink this because this morning she woke up yelling at something to leave her alone - go away - she doesn't like it and she was hitting and grabbing at something in the air. I decided not to send her to school like that and so far this morning she has repeated that 2 or 3 times. Still a lot of talking to herself, but will answer appropriately when spoken to and will entertain herself, watching TV or drawing. Just every now and then, she will knit her brows and get upset about something. There's something on the internet that tells you how to do a yeast test by spitting into a clear glass of water first thing in the morning, and if it sinks after a while, or has tendrils that hang down, supposedly it indicates overgrowth of yeast. Well her spit just floated on top. I don't know if that's an accurate indicator or if maybe I've gotten some of the yeast under control with all the grapefruit seed extract and pure lemon juice and coconut oil I have been giving her for the last few days. Again, I'm wondering if the symptoms I'm seeing is from yeast die-off. another thought I had (which is a little far-fetched - but I'm reaching) When her PANDAS started last November she had been taking fish oil for about 4 months (which I then stopped and restarted a month ago) Supposedly fish oil, along with vitamin C and other high antioxidant fruits, vegetables are natural chelators of heavy metals and since, according to her urine porphyrins test she has high levels of mercury and lead, I wonder if its possible that some metals had started to move, which can cause some strange behaviors. Since she is currently on antibiotics, I can't imagine that she has become re-infected by strep right now - unless the augmentin just isn't doing the job.

You say that your daughter has not had any symptoms since being on prophylactic abx. Which one is she on, and has she not had any problems with yeast? Do you give probiotics or nystatin or any of the natural anti-yeast products? thanks, Pat

 

 

 

 

Anyway, the last couple of days she has been worse than ever, talking to herself quite a bit, and at night it takes her almost 1-2 hours to fall asleep, even crying, hitting out at the air, the wall, herself, saying that something is being mean to her and she doesn't like it. She's also complaining of seeing floaters (little things floating around in her visual field). This is something that she had complained of last year when her PANDA symptoms were at their worst.

The interesting thing (and I don't know if this is just coincidental or not) is that this ranting and raving about people being mean and swatting at non-existing things started right after I gave her a nice warm, detox bath with epsom salt which is supposed to be relaxing. Tonight I just gave her a warm shower, and she had the same reaction right afterwards. I'm wondering if there is something related to the warmth that bothers her? I will try tommorrow night and the next night without any baths or showers at all and see if there's a difference.

[bmom]

Pat,

I am not sure what the answer is. I know when I try too many things at once, I always get confused as to what might be causing it. I would consider letting IVIG take its time over the next few weeks. We are meeting with Dr. K on Thurs. so I know he should be back soon. I am going to ask him many questions and a lot about what exactly "turning the pages" looks like. I can ask him anything else so let me know if you want me to ask him other things. I do think that it seems that IVIG patients seem to have some behaviors in the 3-5 week periods. At least from Diana, another mom who I have heard from and possibly you and "Worried Dad". Perhaps he will post and update what is going on. Diana's son is in week 6 and seems to be smooth sailing this past week. Hope things settle soon. Please keep posting and letting me me know what is going on. I am keeping track of the 4 children (Gaby included to see if there is a pattern) since my son will be getting IVIG on Fri. and Sat. Thanks so much!!

[Dedee]

There was one thing that jumped out at me when reading your post. Grapefruit or it's by products taken orally can, in some cases, have strong reactions with other medications and / or supplements. It's one of those innocent sounding things that has a tendency to cause negative reactions when mixed with some meds. By itself it is not a problem. It is the drug interaction that is the problem. That may not be the case here, but I just wanted to mention it. Good luck trying to work through this. I am so sorry you are having this set back.

 

Dedee

[EAMom]

Wow Deedee...you are right about the Grapefruit. Good point!

 

http://bipolar.about.com/od/medications/f/...grapefruitj.htm

 

http://www.eurekalert.org/pub_releases/200...m-gja011705.php

[Worried_Dad]

Hi, Pat:

 

Hang in there - I really believe we're on the right road, but it's got some potholes in it!

 

Here's an update on our son's progress. Again, I want to preface by saying that because of his age (12) and the severity of his symptoms, Dr. K was very honest with us up-front and told us his recovery will likely take longer than average.

 

That being said: we saw steady progress for about 3 weeks post-IVIG, then hit a rough patch during week 4 when we saw a reappearance of our son's earliest symptoms. These included twitching / tics, muscle weakness, difficulty walking, headaches, and the joint and back pains that originally led to a diagnosis of rheumatic fever. Not as severe or as constant as back in Summer of 2007, but much more pronounced than we'd seen in many months. This seemed like classic "turning the pages backward" stuff, just as Dr. K told us to expect.

 

During that rough patch in Week 4, the OCD improvements seemed to stagnate, and our son had 4 brief "panic attacks" for no reason he could explain (no obvious trigger that we saw, either). They lasted less than an hour, but during that time, his OCD got noticeably worse.

 

Now we just finished Week 5, and it went much better. No more panic attacks, and some gradual improvement in OCD. His anorexia is completely gone now - he eats more than Mom & Dad combined and has gained 8-9 pounds back since pre-IVIG! The most wonderful, visible sign of recovery, though, is his mood. He's laughing and joking again, playing with his younger brothers more, and smiling more openly. We still have a long way to go before the OCD has lost its grip on him... but we're seeing definite signs of recovery! (Last 2 nights, he's slept much better / longer, too. We're hoping that the combo of more food and more sleep mean his body has a chance to heal.)

 

Spoke with Diana, too, and she and I have both talked with Dr. K (as well as some former Dr. K patients / parents who are now success stories). Based on that - and what we're seeing - and our son's age - here's what we're thinking now. It will probably take 6-8 weeks at least before we get to that magic moment where our son is back to 80-90% of himself. Even then, it will probably take another 6-9 months before his brain heals completely and we realize the PANDAS is really, truly gone. If it's sooner, great, but we're figuring we're going to have to be patient... again.

 

From what the "success story" folks have said, it will happen, and it's worth the wait! We're just praying that it works out that well for our son, eventually.

 

Hope that helps, y'all. Good luck to everybody - our kids deserve a break!!!

[Buster]

I checked Gaby's BP and it was about 78/52 - pretty close both sitting and standing.

 

Hi Pat, I agree the adult cuffs are tough to use on kids. Typical BP's for children are located at http://www.nhlbi.nih.gov/guidelines/hypert...n/child_tbl.pdf . I wasn't sure of Gaby's age but it looks fine (i.e., in 30th percentile or so).

 

You say that your daughter has not had any symptoms since being on prophylactic abx. Which one is she on, and has she not had any problems with yeast? Do you give probiotics or nystatin or any of the natural anti-yeast products?

Yup we give a couple of probiotics. We haven't observed a yeast problem.