nicklemama

Although I have no experience w/ fifths disease, my DS flairs when he gets colds/upper respiratory viruses.

DeeDee- I will definitely update. We are on day two of methylfolate. Yesterday was a teachers workday for report cards so he had no school. He was home all day and he was a little emotional. More than usual but not terribly. He cried when he lost at a Wii game and he cried just before dinner when the ice cream man came around (who comes around at 6pm???) and his dad told him no. That said, I am thankful because when he's not doing well, no usually means anger rather than crying. I am going to ask his ped to draw blood for the MTHFR gene. I think I'm going to ask her to do the urine KPU test, as well.

Thanks for all the recommendations. I found a yeast free bread today and Better Health food store and some cous cous that is yeast free. Took DS shopping w/ me to find things he might like. He's taking this really well. Wonder when the honeymoom will be over and he'll be sick of it? Amy Yasko's book is currently out of stock on her website and at Amazon. I found on her website you can download the book for free!!!!

I'm probably too late on this but DS takes Claritin w/out a problem.

LLM- Thanks for the good advice. DS is very low in tryptophan and I am off to buy some today. His tyrosine and zinc are normal. Would you add zinc anyway? DS has been taking sacc boullardi for more than a yr now. He didn't test for it. Now I am wondering. The two things that were tested that he has a serious allergy/sensitivity to are brewer's and baker's yeast, plus swiss cheese. That's weird. He never eats swiss anyway. Can't do the garlic pills. He is showing a mild garlic allergy. I was given a list that I bought at the clinic yesterday of what to give DS..... new multivitamin to replace the one he was taking, digestive enzymes- Klaire Labs Interfase Plus and the label says it has DPP-IV in it, ProThera l-methylfolate, Klaire Labs P-5-P (pyridoxal 5-phosphate dietary supplement(B6 metabolite) and Biocidin. Missed one- Xymogen ALAmax CR- controlled alpha-lipoic acid- combats oxidative stress, facilitates whole body glucose utilization, regenerates Vit C,E and CoQ10, regenerates intracellular glutatione, enhanced w/ biotin. The B12 shots have been ordered at a compounding pharmacy, which happens to be near my home. I've got to buy tryptophan and borage oil today. I've been giving him an Omega 3 (Nordic Naturals Ultimate Omega). Let me tell you, it works!!! His omega 3's are sky high. He needs the borage oil as an omega 6 to balance his omega 3. I was given an order in which to introduce the new supplements. Methylfolate is number 1. B12 is number two and we'll start that on Monday.

I've been watching all the posts about methylation/sulfation with interest. Took DS8 to see a biomed doctor 6 wks ago and had blood and urine drawn for testing. Our follow up to find out results was today. Low in B6, B12 and other B vitamins. He's got other markers that indicate methylation/sulfation issues. He has an overgrowth of Klebsiella in his gut. High copper. Severe allergy to baker's and brewer's yeast and Swiss cheese, in addition to the environmental allergies he was tested for by an allergist. Low in tryptophan (no wonder he needs melatonin to get to sleep at night). He's going to be starting methylfolate supplement and B12 shots right away. He has other supplements to start but we are staggering the starts to one at a time to see how he reacts. I have a lot of reading to do. Just wanted to post this and encourage others to consider investigating methylation/sulfation and other factors. DS had IVIG nearly a yr ago and has done pretty well but he still has some OCD/anxiety left and he flairs w/ exposure to strep and when he gets sick w/ colds/viruses. I had a hunch after reading posts here about methylation/sulfation and I'm glad I followed through. We'll see how treatment goes. The biggest hurdle will be instituting NO YEAST. That means no bread or crackers, among other things, even gluten free because it all has yeast in it.

I did the survey. DS's original dx was sensory processing disorder and he had OT for it. Didn't help much, though. PANDAS treatment virtually eliminated the SPD behaviors.

I was a little disappointed in the article. He states that children can be born w/ damaged gut flora courtesy of a less than ideal lifestyle by the child's mother. Do we really need this kind of additional guilt? Is this REALLY a cause a PANDAS, a mother's lifestyle? It promotes the GAPS diet which appears to emphasize traditionally fermented foods and tells you how you can ferment your own foods. He was on the right track talking about GUT flora and how important the gut is then took a wrong turn, in my estimation.

I suspect Dr K suggests folic acid for its anti-inflammatory effects. That seems to go along w/ the other supplements on his post IVIG list. I am reading this w/ such interest. I suspect my DS has high histamine. He's recently tested positive for environmental allergies and been put on daily Claritin, which has helped. We saw a biomedical dr nearly 6 wks ago and he told me DS would probably need a different form of folic acid but we'd do nothing until the test results were back. The appt is on Tues. I have been very tempted to do a trial of pepsid but I'm forcing myself to wait until after the appt.

The first 6 wks post IVIG, my DS was ticcing pretty bad, then it all went away. At 90 days out, he was doing great. It takes time to see results of IVIG. It was a slow and steady process.

My DS is a swimmer. Swims on a swim team during the summer and we have a pool membership and are at the pool at least four days a week all summer. Summer is the best for him and I've never noticed any relationship between the chlorinated pool and his PANDAS behaviors.

The XClear is also called Spry. I have the nasal spray, mouth rinse and gum. We've been having DS rinse his mouth twice a day after brushing.

I know its weekly for a yr. The allergist told me it would be once a week for a yr, every other week for a yr and then once a month for a yr. It seems daunting to go once a week for a yr. I'm not sure we are going to do it this yr. I can't keep DS out of flairs. He sees a biomed dr in a week and a half and I'm going to talk to him about it. We are considering another IVIG, at this point and I will not do the allergy shots until well after IVIG.

Mary- This is so encouraging. DS has his appt in 1.5wks.

I treat w/ treatment dose abx for a week. I recently read right here about XClear, a mouthwash containing xylitol. Since DS has a tooth coming in, I decided I'd give it a try. He's still on abx and doing better now, but I will continue the XClear (also called Spry rinse) as long as the tooth is still working its way out. I figure it can't hurt and it will help his teeth. I also bought the Spry gum and nasal wash. DS loves the gum and says the nasal wash feels great.

I could have written this post a couple of yrs ago. My DS does not have lyme. He has PANDAS. I thought he was bipolar. We started taking him to a therapist but it didn't help him. I finally asked for a referral to see a psychiatrist. He was first put on Celexa. Don't go that route. When that was a disaster, he was put on Lamictal. It worked to help keep the most aggressive behaviors tamped down. I don't know much about lyme treatment. Your post caught my eye and felt I should at least respond w/ what helped us. Our lives were a nightmare, except I don't have other children to worry about. I am also bigger than you and I am strong and my DS was 5-6yo and I could then physically handle him but it left me spent, emotionally and physically. Today, I would not be able to handle him as he has grown quite a bit. If you go the lamictal route, it takes a few months to get to treatment dose. You may have to consider a more heavy duty medication to help you. My DS also went to school and behaved just fine. Teachers loved him. When I got him in the car, it all started in. I clocked watched for bedtime, another nightmare for us, and then would fall apart when he went to sleep and gave us some relief. I feel for you. I know exactly what you are going through. We even took him to the psych ER one night. They didn't keep him. They questioned us all, separately, and I could see they were considering the problem was us, not our son. Fortunately, our DS told them every behavior he had done that evening and they managed to get his therapist on the phone to talk to her. Get started w/ psychiatric help so that if things go really bad, you'll have professionals in your corner. I can't say its going to help your DD a great deal if she has lyme but you may need that documentation. PANDAS treatment has helped my DS tremendously. Wish I could be of more help w/ the lyme. I just wanted to reach out to you and let you know others have been in your shoes and its the most awful, horrible time in parent's life. I had many breakdowns of crying and absolute despair. I am so sorry this is happening to you.

DS has been swallowing pills since just before he turned 7. He swallows two huge fish oil pills every day. DS was on 250mg of azith sid when he was 7 and weighed 55lbs.

We are considering embarking on allergy shots. DS has developed allergies over the past couple of yrs. Right now, the Claritin, Flonase and Patanol eye drops are working pretty well for him. His allergies aren't awful but they are bad enough that the allergist recommends the shots. We have elderly cats. DS has developed a mild cat allergy. The allergist told us it would take 3yrs to complete the shots. I'm trying to figure out how I could get him to once a week shots for a yr.

I couldn't agree more.

He is currently on a prophylactic dose of 250mg augmentin sid. When he has a flair, he takes 500mgs bid.

I think this question varies w/ the child and/or the physician. For reference, my DS8 has been on antibiotics continuosly since diagnosis in Oct 2010. That is nearly 18 months now.

Seeking Relief- Have you looked into the NIMH trial? They are recruiting right now. You can google the NIMH pandas trial or go to www.pandasnetwork.org and find the link.

Dr K is DS's PANDAS dr. We use Nordic Naturals Ultra Omega. It has 650mg of EPA. Dr K wants a minimun of 500mg EPA.

I recently ordered Spry (XClean) rinse and Spry gum for DS. He has a tooth coming in that is causing a flair. I've been using the rinse and gum w/ DS for a few days now. He likes the taste. They both have xylitol.

Trish- My DS is not the only child on this board who has been triggered by FluMist, unfortunately. We've been told by two PANDAS doc not to give DS any more vax's. I would mention that in hindsight, my DS had mild PANDAS symptoms well before the FluMist. It started when he had an ear infection just after turning 5. He had mild irritibility and some tantruming afterward. It wasn't anything that seemed to out of the ordinary, though, and it went away. Dr K feels he had a strep infection that caused the ear infection and the mild PANDAS symptoms. Fast forward 9 months and one FluMist and it hit him very hard.