NancyD

It was definitely overnight onset at the age of 3. Happened immediately following a staph infection in her hand. Never had a tantrum prior to this and, up until then, she had been been very placid and underreactive and also sleeping through the night in her own bed since she was 6 weeks old. Also started with one tic (wiping her hand across her eyes), which I thought was due to an allergy back then I kept a journal when she was little so I can pinpoint to the week when this happened.

Thanks Vickie! Hope you're doing well...we'll have to catch up with one another one of these evenings. Nevergiveup, we check my daughter's IGG levels every other month. They used to be low but they are now on the high side. Let us know what you see. Nancy

Hi all, It was a rough winter (thus the reason for falling off the face of the earth), however things seem to be improving. We have continued with monthly IVIG infusions (1.5 g/kg for the first infusion and .75 g/kg thereafter for past year and a half). For about a year, tics were 99% gone, she was sleeping well, rages and mood dysregulation 100% improved, grades went from Cs and Ds to straight As and school bumped her up a grade in one of her subjects. The only thing it did not help was OCD issues, which seemed to improve significantly with 3x daily dose of ibuprofin. DD14 went downhill in late November and although she got a bit better she never got back to where she was in the previous year. We tried doubling her Pen VK dose and also tried high doses of Amox and Augmentin, but that made her worse (increased yeast levels even after doubling probiotics). Although she came in contact with a lot of colds, flu, and strep, she remained asymptomatic throughout the winter. Never got sick. ASO and AntiDNASE B levels have been relatively low since starting IVIG. Prior to beginning, her levels were in the 3000 range. She did get one skin infection after another this winter - toenail, stye, then toenail again. Of course, had to take into consideration normal early teen and hormone issues... After reading comments on the forum and talking with Diana over the months I decided to push for a higher IVIG dose this month and our doctor agreed. So we just did 1.5 g/kg on Wednesday. I have always wondered if the reason for my daughter's success in the first year was because of the high dose in the first infusion or due to the monthly infusions. So I decided we should test it. We're going to take a 3-month break from the infusions to see what happens. We took one break after the third infusion and about 50% of her symptoms came back. So I'd like to test it again and give her antibodies time to settle down. My daughter told me over a week ago that she did not feel the ibuprofin was working so we decided to stop that as well and see if it gets any worse. She says no, so we will stay off the ibuprofin. It's only been two days but I already see improvement. Hopefully I will have more news to report back soon. In the meantime we have an appointment with Dr. L next month to see if she recommends pheresis or PEX. If she does do pheresis I want to be sure we follow it up with another high-dose infusion. However, it would be great if we could do the infusions less often. Although I have been gone for a few months, I have been reading. It's a great forum and I have referred many parents to it. We have been living with PANDAS for 11 years now and I can tell you without question, it has been by far much more difficult of a road to travel than living with ASD! Best to all, Nancy

Anti-fungals for yeast overgrowth. Yeast can grow anywhere in the body, particularly in the gut. There are mild anti-fungals like nystatin and higher potent ant-fungals like diflican. Nystatin can be helpful for some people with very few side effects, but it was rather ineffective for my daughter. She required the more potent anti-fungal, diflucan, but she could only take it for short periods of time as it elevated her liver function. You must check the liver when on the more potent anti-fungals. Our pediatrician, pedi gastro, and DAN doctor all prescribed them.

I read the first half of this book today and I could tell within the first few pages that the boy must have PANDAS. I had to put it down for the day as I was feeling very depressed from reading it. Just knowing how these kids must feel and what they go through at school...so very sad!! Meg's Mom, my daughter's primary issues when she was young were mood dysregulation, rages, and sleep problems. She also had one minor tic and perseverative behavior. The serious tics, anxiety, and OCD-like behaviors did not start until her pre-pubescent years. Nancy

Oh Susan, I'm so sorry...it's always something, isn't it! Yes, this really sounds like it may be yeast that is aggravating her. That's why my daughter can't take zith and some of the other stronger antibiotics. I give her Milk Thistle (3x daily), which is an antioxidant and anti-inflammatory and helps with yeast. There are very few, if any, side effects. You may also need an anti-fungal for a brief period. Nancy

We have been taking 4Life Transfer Factor for years and I swear by it! My daughter gets 3 capsules 2x daily and when we see the slightest bit of a cold I increase her dosage and also give her 6 capsules of Querciplex. Between the two it can really nip the cold completely or shorten its lifespan to 2-3 days. I don't take it daily but I do take it (and Querciplex) if I feel a cold coming on. Transfer Factor is made from bovine colostrum. Nancy

I have it but I have not yet read it. It's next on my list of books to read. I breezed through it and it looks very good. They don't mention PANDAS and barely mention strep, but it looks like it gives good insight into autoimmune diseases. Nancy

One other thing I used to do that worked well with blood draws. I made arrangements with the head of the blood lab at our local hospital to whisk Sarah in the back door so she didn't have to sit in the waiting room or walk in the front of the lab. Three technicians would meet us and we would quickly get Sarah on my lap and draw her blood. We then headed to the gift shop where she could pick out one Webkinz. It became routine after a while and it worked well. Nancy

We tried Atavan but Sarah said it made her much more anxious. She does not do well with most medication. I always dreaded blood draws and IVs since I knew I would get physically bruised from her. It took 3-4 people to hold her down. She screamed and kicked and tried to run away. Once at a children's hospital they saw her coming and said out loud so I could hear "oh no, not her again!" That was the last time I went there! Now that she is older and doing a monthly IVIG it has become routine. She still hates it and takes it out on me verbally, but once they get the IV in she is fine. I have tried it all -- preparing her with stories in advance, desensitizing her with replays (doing it on a doll), driving 30 different ways to the hospital so she wouldn't figure out where we were going until the last moment, springing it on her at the last second, bribing her with prizes, etc. The prizes seemed to work the best though they got more and more expensive over the years and I had to stop them after her first IVIG infusion. I used to let her pick out her prize in advance and then we would buy it right after the blood draw or IV. Now I remind her one week in advance about the upcoming infusion and when she moans and groans or is verbally abusive, I ask her which she would rather have -- the tics to come back or the infusion. But she's old enough now to process it cognitively. She hates it when they chitchat too much while doing it, she hates it when they count to three, she hates it when they use anything sticky on her arm, and she hates it when they are too cheery. They can't give her a band-aid and they can only use certain needles. Oy!!! I always have to give instructions as to the do's and don'ts so we can minimize her angst. I hate blood draws!! Nancy

We tried it twice when Sarah was little. It only seemed to make her anxiety worse since you have to do it in advance. Nancy

I guess probiotics can cause dye-off though I have never seen it cause the kind of dye-off that antifungals do. I don't honestly know why probiotics do that to her -- when I say activate, I mean cause hyperacticity, irritability, mood dyregulation, etc. But, many supplements do that to her. She's really very sensitive to supplements and medication. The one she does take -- bifido factor -- is extremely gentle and is usually given to babies. If you have given Culterelle in the past and he is okay with that, then that should be fine. Whenever I start my daughter on a new supplement I do it very slowly and never layer it with anything else new otherwise I won't know what's working and what's not. Nancy

Hi acdrobert, I can't advise you what to do here, but I can tell you that my daughter has been on 400 mg motrin 3x daily for the past month and what a difference it has made for the OCD! I can tell when she misses her mid-day dose. I am aware of the side effects and we do check her liver monthly when we do her IVIG infusions. I would much rather give her motrin than all those psychiatric meds we tried over the years. Nancy

Good luck with the scope next Monday, Sam! That is never a fun ordeal for our kids! I can still remember scoping Sarah from both ends when she was 5. I had to stop the car at a rest stop on the highway while she was in her car seat so I could get her to drink the nasty prep stuff before the procedure. I knew if I did it at home she would run from me. To this day we always laugh when we pass that rest stop! Nancy

Hi monarchcat, It could be yeast overgrowth. Yeast can certainly cause those types of behaviors. Azith and other antobiotics did that to my daughter. You did not mention an antifungal so I'm not sure there would be die-off unless he is taking something for the yeast that you did not mention. It could also be symptoms from the PANDAS. Mood dysregulation, rages, irritability, and irrational behavior can all be symptoms of PANDAS. He may also be reacting to the probiotics. Did you layer them on slowly and carefully so you can see any changes in behavior? The only probiotic my daughter can take is Bifido Factor. Florastor, Culturelle, and all the others really activate her. Nancy

I've been dealing with ASD, Colitis, and PANDAS issues for so many years that sometimes it's difficult to see the typical stuff when it smacks you right in the face. What complicates this is the fact that she couldn't have her Motrin as a result, which in turn impacted her PANDAS issues. Nancy

Yikes...how scary, EAMom! I know my daughter would like to lose some weight so this did concern me. Her teeth are not really hurting right now but the Motrin works wonderfully for her OCD issues. It's my new best friend! The key, I have discovered, is that she MUST take it 3x daily. Too short a half life! Nancy

Yikes...how scary, EAMom! I know my daughter would like to lose some weight so this did concern me. Her teeth are not really hurting right now but the Motrin works wonderfully for her OCD issues. It's my new best friend! The key, I have discovered, is that she MUST take it 3x daily. Too short a half life! Nancy

Great thought...though in my daughter's case I knew this wasn't an issue since she is in a small private school -- only 6-8 kids per class and there are only about 30 kids in the middle school. Very few sensory issues there. Thanks Peglem! Nancy

I really didn't think this was the problem as she LOVES to eat. That's why this baffled me. But when Vickie suggested that maybe she is trying to avoid brushing teeth mid day --figuring if she doesn't eat she doesn't have to brush her teeth -- that sounded more like my daughter! So I asked her and she had this big smile on her face. I think I will try and find something she can eat if she is so busy that she doesn't want to brush afterwards. Great idea. Thanks dcmom! Nancy

Bingo...that's it, Vickie. I asked her this evening after reading your post and she admitted it to me. She doesn't want to have to brush her teeth! Thanks Vickie!! Nancy

Kelly is an awesome nutritionist...I highly recommend her!! We have worked with her since Sarah was 3 and she helped us through many rough times. Nancy

Hey Sam, I do know about the anorexia and that's what worries me. I have been emailing the school nurse and her counselor to enlighten them about it. Now that you mention Shae's eating pattern with school lunch I should ask them to monitor how much lunch Sarah is eating when she does eat. I bet she's doing the same thing! Will Shae eat at home? Sarah seems to do fine at home. It's just school where the problem is. For years Sarah was allergic to soy and highly intolerant to gluten and dairy. By 7 her diet was mostly rice-based -- though she ate fruits, vegetables, and some meats. However, she craved anything with yeast. She used to drink balsamic vinegar straight from the bottle if I turned my back! Naturally, she turned up intolerant to rice and yeast. That is when I started her on a rotational diet and we started her with monthly glutathione IVs. After 2 years of glutathione IVs we tested her again and she was no longer allergic or intolerant to any foods. Since then she's been on Pen VK and my guess is she may be intolerant to yeast again. Nancy

Today was SO MUCH better since she had her Motrin 3x today. I think a big part of the problem is that she had braces put on her teeth a month ago and she's still not used to them. Often times she skips lunch at school and the nurse won't give her Motrin if she does that. The lack of food in her stomach may be a big contributing factor to the recent mood dysregulation. I just hope skipping meals does not become a regular thing and then that turns into an eating disorder. It's strange how these symptoms keep morphing into something new! Nancy

This is REALLY wonderful news, Melanie. I'm so thrilled for you! I, too, am very concerned that he's not on antibiotics. I hope your doctor will get him on it right away. Keep us posted. Nancy