hugs2day

I posted about my son's hyperactivity nearly a week ago after episode started with loss of a baby tooth. He started a steroid burst (first ever) and it helped him tremendously. Today is day 5 of steroid burst he looks really good. Calm, talking normal instead of constant nonsense talking, sleeping 1o hours straight for 3 nights now and falling asleep faster instead of sitting up in bed and kicking his legs and talking and laughing. Its the first time he ever took steroids and I was so nervous but a huge relief to him. I did notice he had increase in appetite though. Now that the burst is over I pray he can hold on. Will let you know.

I have no med advice other than antibiotics and antifungal, but for us what helped my older son was supplements. Pycogenol, Omega 3's, Zinc, probiotics and multivitamin, he responded very well to supplements and calmed down for the most part. Limiting sugar helped too. Also adding vancomycin at reg dose for a week helped tame down aggression in my son. I'm too scared to use meds bcuz of what I have read on this forum. I do use melatonin or clonodine on my child if needed. Good luck.

I know a 25 year old that went her entire life without diagnosis of PAndas until age 23. She had several 72 hour stays in hospital due to suicidal thoughts, anxiety was attempted to be managed by lexapro (amongst other pych drugs, lexapro worked somewhat) that helped some. Mostly therapy is what helped her she had very tough time finishing high school and college due to incompletes when she was homebound. She also gets diseases like shingles, chronic sinus issues (several surgeries), strep throat and when sick her anxiety and Ocd are off the charts and she is sick frequently. She is finding some relief with abx longterm and would like to get off her psych meds as she does not believe they help her. Exercise and diet helped her at many times in her life as well. She worked with my son for years (missed a lot of work too) and when my son developed pandas she was aware and she researched it with me, she came to the conclusion that is what she was suffering with since age 5. Like you she has had ups and downs, but able to still live her life. Keep posting very curious to know how abx works out for you. Best of luck for lifelong healing.

That is interesting my son did not get those vaccines, not one prevnar. He had chronic strep and eventually PANDAS after T&A. He has high IgM not sure about IgA.

My son is starting a flare (lost a tooth yesterday) and today hyperactivity is 12 on a scale of 1 to 10. Can't sit keeps running and pacing. How can I give him some relief? Our doc said to increase his Azithro did that several days ago, also using Ibuprofen, I have a script for steroid burst have not filled it but thinking maybe we should try it out. Dr. gave it to us months ago for a previous episode and we chose not to fill it because our DS6 started doing better with adding keflex to the mix. Its Saturday and that is all I have access too. I know his symptoms will escalate fast if I cannot get the inflammation down. I am not sure if a second antibiotic should come before steroids because it is his body over reacting to oral bacteria, and could the steroids make things worse since steroids lower the immune system or is it not the bacteria to blame but just a dysfuntional immune response. I also have augmentin in my cabinet I can mix up from when we switched. I hate playing doctor, but I can't reach doctor until Monday. Any supplements that will help that I can add to the mix? Currently using Enhansa and magnesium, no b vitamins. Thinking about gving melatonin or benadryl just to relax him a little and give him some relief. Its 2pm. I also have clonodine in cabinet but I don't want to pull that out yet, because he is still manageing his anxiety pretty well. Is the hyperactivity due to high dopamine caused by the auto immune response? Urination is like every 8 minutes today. Any suggestions? I homeschool him this year because of the PANDAS and he was doing pretty well overall, certainly not back to baseline but not too far off either. I knew when I saw the loose tooth I would start seeing symptoms and we are.

I'm sorry for your pain, I was there as well over a year ago when pandas first hit both my children hard. A DAN doc saved my kids and through the crying and lack of sleep I managed to make them comfortable while getting them thru some tough times. Its scary and sad but I have hope for all of us because I hear others with stories of recovery. I used to be paralyzed to help them I would take care of them but had fear in my body constantly now I have changed to living in the moment and day by day because we never know when pandas will hit again and it has. Sending you hugs and take 5 minutes at a time ... it will pass. Sending hugs and prayers for strength and endurance and healing.

Thank you this was a lot of good information.

My kids went through this before abx, and the sweat had a scent to it that was sweet or yeasty. I always figured it was thier bodies sweating out the bad stuff because they would sleep good and look better next day. They also had urine that smelled like a chemical over a year later we describe it more like ammonia. It hasnt happened to either one of them since starting treatment for pandas.

my son also suffers chronic staff in nasal passages he was treated with bactroban in nose and keflex as a 2nd antibiotic it helps tremendously and then will resurface about 6 to 7 weeks later. This last time the doctor also added Flagyl because he said staph can live in the intestines, that was a major major help brought us some really good behaviors and he lost his fear of leaving the house and social anxiety. I'm mot holding my breath its cured but I think we went a step in the right direction.

my son tested low on vit D on Quest labs and we started supplementing 2000iu daily a month ago I see no side effects. But I am supplementing my younger son who is the rager with bad ocd. My older pandas is the ticcer and I am not supplementing him he tested in the normal range.

I'm new to the LYME forum, my sons have been suffering from PANDAS symptoms for years undiagnosed. The last few years have been under treatment and doing pretty well for the most part, but never back to baseline. They both present differently with PANDAS symptoms and the more I research the more I keep coming back to LYME. My kids have a postive ANA titer and so do I. I switched from Negative to postive on the test 2 years after my youngest son was born and my health changed for the worst. A lot of my symptoms fit what I have read about LYME and ofcourse my sons have every PANDAS symptoms between them my youngest is much more severe. Are positive ANA titers common in LYME? Rheumatologist said I do not have Lupus and that the test is non-specific but I have high sed rate indicating inflammation and so do my kids. Pediatric rheumatologist said the same thing about my kids and recommended ibuprofen. So we don't fit the Lupus symptoms at all. I want to get Igenex testing but its expensive and from reading this forum not sure it is really conclusive. Like PANDAS seems like clinical diagnosis is what we should rely on. Please let me know if this is a common finding in LYME. Just beginning to understand and explore possibility of Lyme and co-infections. Thank you.

Since PANDAS started my son can't travel far for many reasons but one of the worst physical symptoms is his frequent urination. Its very frequent and sometimes he has to actually urinate other times nothing comes out. That worries me that his kidneys could be damaged over time. Is there any information on this symptom? Research/treatment??? This symptom never remits even when the psych symptoms tame down into remission. He has been suffering since age 5 is now almost 7 years, worried this symptom is permanent...

Does Dr. B agree that teeth cause PANDAS symptoms? I just paid a fortune to see a DAN doc that was recommeded as a top doc treating PANDAS in children with autism and he told me, PANDAS is not related to teeth. I beg to differ though because AlL of the bad episodes my son had occurred concurrently with loss of baby teeth. too conicidental. It is a trigger for him. I am on the west coast and cannot afford to travel to see Dr.B wish I could. Please share if you can. Thank you.

Your probably right, because last night the attack was on his arms. It was in bed and he was having trouble falling asleep even with melatonin, kept telling me my arms hurt help me. He wanted them scratched not rubbed or massaged and he was anxious and in a hurry like they were on fire. So I no longer have restless leg syndrome theory I wonder about stress, histamine, toxins, neuropathy, thyroid ... the list goes on. Probably it is neurological because PANDAS always effects his vestibular system. Although, Benadryl did help so maybe histamine. My son is 6 and has organic cotton sheets and comforter, very little furniture in his room to avoid allergens and an hepa air purifier. I'm pretty sure the itching is not on the skin it is nerves underneath. He was diagnosed at 3 with autism which I know recognize as PANDAS and he has been organic and detoxing for nearly 3 years it is not enough to counteract this bacterial problem. Doctor added Flagyl a couple of days ago hopefully that will bring some relief to the discomfort and agitation.

Thank you for sharing the probiotic info. I have been looking for a new probiotic and gutpro custom probiotic looks good. I live way too far to attend but look forward to hearing about your meeting. Thank you for all you do, you give me so much hope.

My son had an attack of pain on his legs last night, very consistent with Restless Leg Syndrome, he woke up and the symptoms kept increasing from please scratch my legs they are itching to screaming help my legs hurt. He kept jumping to different areas of his legs scratching and complaining like he was getting shooting pains in various parts of his legs. It lasted over an hour I had to give him Benadryl, Ibu and put steroid cream on him eventually he fell back to sleep because of the benadryl. After he fell asleep I saw his legs have some small jerks for a little while. He is on week 4 of recovering from PANDAS attack. Did any of your kids experience RLS? I read its neurological and it seems just like RLS.

THANK YOU. I did just that I gave him a night off of no bath and the itching wasn't quite as bad. He has sensory issues since very young and I remember the itching starting at age 3 but managable with a few scratches and lotion. NOt like now during PANDAS symptoms where he gets agitated over it we actually think of it as a PANDAS symptom now but it is so bad it accompanies the other Neuorpsych symptoms. It could be a sensory problem I gave him body brushes one with hard bristles and one with soft bristles and he has found a little bit of relief using those. I don't think it is the Azithro, gosh I hope not I consider that his paxil right now. Augmentin hurt his stomach and it didn't remit his symptoms as well as Azithro.

My son's ammonia came back high from Quest, and his DAN said could be gut bugs or Mito issue. We know from his severe gastro issues that it is gut bacteria because he responds well to two antibiotics at once vs one. Recently started FLagyl we will see how things go. The DAN said the best way to get out ammonia is poop it out but sons bowels are so slow with all the biomed treatment we are lucky to get one bm a day. This is very interesting. He was diagnosed PANDAS because of his history of strep but now he gets exacerbations with any exposure to infections or viral. I was bit by a cat and contracted an infection several months before I got pregnant with him and now am wondering if this is LYME.

That is interesting the itching is at its worst after bathtime at night before bed and he definitely has trouble sleeping. I will be researching this hormonal imbalance. I know kids with autism often have hormonal imbalances. Thank you for the insight. Lyme crosses my mind too but not ready to go there yet because his symptoms seem textbook PANDAS to me because of his long history with strep, staph and impetigo.

That is what happened to my son until he was in crisis. In hindsight if I had known about PANDAS I would have seen the signs, I thought he was just going through kindgergarten anxiety, bladder uti and childhood fears of ghosts and dogs for about a month and then overnight went into crisis. There were warning signs I just didn't know about them.

My ds6 is having PANDAS symptoms since school started. One of the many physical symptoms is he complains of chronic itching that aggitates him and wakes him up from sleep as well. He describes it as shooting pain and then itching like bugs crawling on skin. Anybody elses children experience this symptom? He is on HD Azithro and rotating strong probiotics. I first I thought yeast but it is worse when in PANDAS flare up. Thanks

My ds6 had been on Azithro for 10 months on a daily regular dose any effort to cut back results in symptoms ramping up. I'm worried the abx is going to stop being as effective. My question is, should the dr. be rotating antibiotics? There has been several occasions over the past 10 months in which my son developed impetigo while on Azithro and the doc added keflex. My son responded really well when on both antibiotics. Also what tests do I ask for to look for coinfections? I would appreciate anyone who could direct me to get more diagnostic testing because it concerns me my son did better on two antibiotics.

You can get a list of doctors currently treating pandas from the yale university contact that is enrolling for the Yale-NIH clinical trials. Follow the link off the website pandasnetwork.org http://pandasnetwork.org/2011/02/yale-nih-details-on-pandas-ivig-clinical-treatment-study/ She will email you a spreadsheet and it lists doctors that will take phone consults, and those that won't, etc, sorted by state. This was a big help for us, because my son was homebound and could not leave the house. I'm new to this forum but if you can email me I will send you what I was given.

Yes, our second doc. Our first dr. was good, but wasn't willing to go further than hd abx. This new dr. was recommended by a lot of families that use DAN drs. He did a lot of labs and this is the first time my son was prescribed steroids. He would not get approved for ivig cuz his immune panel does not show immune deficient but the dr. said steroids is sort of like the poor mans ivig. I am really worried about 21 days of steroids, he said we can stop steroids prior to 5 days in if things take a turn for the worse, but I guess after 5 days it has to be tapered and no stopping. Thank you for your kind words. .

I hope that is all that it is, I feel like he has gut bugs or something you can actually see his tummy distended and hard. I can hear it making noise and he asks for heat to put on his tummy. He said his stomach hurts bad, but he still has an appetite. He starts with gastro pain and crying with anxiety then a day or two later he looses his mind and the rages and odd and a whole host of symptoms overcome him. I am praying I finally have the right doctor and this steroid taper will spare him the misery.