qannie47

Now that my Pandas child seems stabilized...I now have time to address his twin... He is my borderline adhd/odd child...Yes....wonderful.... I had great results with 5htp. Great results. However, I noticed that after awhile, it seemed to cause too much Serotonin over time, 12 weeks...and abrupt irritability emerged. I have played around with dosages, and with same build up results..So I stopped it about a month ago. I started him on Probiotics about 1 month ago. His digestive issues/stomach pains/constipation have all disappeared, which is wonderful. But the last 2 weeks I am seeing BIG ODD emerge again, along with irritable mood...Phone calls from school.... I am wondering if this is part of a die off process/effect? Q #2 I have him on a wait list for Dr, Greenblatt. Any opinions on him? Thanks Q

I really feel for you. I am sorry that things are so hard/stressful/worrisome for you right now. I hope you find a therapist soon. Does she drink the Boost willingly? If so, maybe you can add chocolate icecream to it and pump up the calories. I know this is not ideal, but in the meantime, until you can get her under some experienced care, if she is willing to drink unlimited Boost, I would at least go with that. Boost was originally made for Aides victims, and so it is loaded with essential ingredients. Is Boost the only liquid? If it is her fear of swallowing, would she submit to fruit smoothies? Anything liquid that you can fortify. Do you think she might be interested in helping you create liquid nutrition? Perhaps getting her involved where she makes it herself, and sees that the food is pulverized and unable to cause choking might help with the psychological aspect... Hug to you.

My ds has been borderline low IGA anytime he was checked. He also had high dose of IVIG....no negative reactions....we used DR.K, so that will tell you about the dose level.

Somewhere I read something about specific body odor. Cant remember offhand where I read it, possibly here...I'll try to jog my memory. I know that ALA causes facial/verbal tics in my ds. Gave it to him 3 times...3 times tics made a guest appearance. So yes, if that is what your asking, there is definitely positive correlations between triggers/symptoms.

They look yummy. I'm going to give them a try this weekend. Thanks pr

I am soo glad for you and your son! Thanks for sharing your uplifting and inspiring story!

I am pretty excited. I went to this holistic store today in the city and I found this "pure" form on turmeric in soft gel capsile form. The person with whom I spoke with knew a lot about Turmeric as an anti-inflammatory. She said this specific product is the best one available. She herself has an autoimmune issue and said that this has worked very well for her. Is anybody familiar with this company? I am going to start it with my ds tomorrow.

Ok pr40, Pancakes: They have to look like them, chew like them, and taste like them.

Just re-read thru entire thread. I wanted to share that we are 9 months post IVIG. My ds is doing great. He has had One big flare this past Sept. Since then, he has had two mini flares. Lasted only 24 hours because I did not wait around to see if it went away on its own. Started full abx asap. He responded beautifully. All symptoms gone 100% in 24 hours and stayed that way. I also want to add that The 2 mini flare were not at all what they had been in the past. Only saw motoric movements and a little emotional regression. Never saw the BIG changes. I was told to expect flares after IVIG, but the upside should be less intense, and shorter in duration. We have experienced that. I wish all kids responded as well to IVIG. I don't understand except I can see why an underlying infection is the culprit, as stated by others in this forum. I know Dr. Swedo groups kids as "responders" & "non responders". With great hope more will be understood on this.... I am a big advocate of IVIG, of course because we had such great results. But I can see why one would be weary. High price ticket and no promises. Many autoimmune disorders receive IVIG as much lower costs....hopefully this will be a reality for Pandas in the near future.

http://www.carabinshaw.com/terbutaline.html

Hi Ophelia, Have you tried a personal letter to whomever the final decision lies? I myself, when I left it up to doctor's notes, and case workers got nowhere....I finally wrote a personal letter to the person/doc whom was weighing in heavily on the decision. Miraculously, it was then that they had a complete change of heart. I believe that the human element/touch is still not lost on some.... If you want, If you pm me, I will send you a copy of the letter I sent. My doctor felt it was what turned the decision around... Q

ibcdwc : I am so sorry that you are experiencing what many of us have....The inability to wrap one's brain around the idea that an autoimmune disorder could present itself behaviorally.. As a parent...I still have a hard time, even though I consider myself a veteran. I have seen the overnight changes for the negative and for the positive. Right before my very eyes!!!...and yet, while I know the truth....It is still a mind bender... Be kind to yourself. You are a great mom, a mom who is treating their child to the best of their ability. Even under normal circumstances, with typical challenges, I think society loves to secretly grade us.... Anybody who is not granting you the support and understanding you deserve can go scratch....That is the motto that I had to embrace. You will sleep better...

Reaching out to those whom are later in the recover phase.... My ds, whom has received IVIG, abx treatment, and T/A is doing quite well. Since his last flare in September, (a horrible one), he has had 2 flares. One in late January, and one just this past week. There has been dramatic differences with his last 2 flares. 1) Minimal symptoms: only motoric movements observed with slight mood change only observed in 2nd flare. 2) Started full dose abx immediately within 12 to 24 hours of observed symptoms 3) Complete 100% turn around in 24 hours with abx to 100% normal baseline behavior As a parent of Pandas, I don't want to get my hopes up, but if this his new baseline....I will take it. While I know that there is no real norm to Pandas, can anybody chime in. Can I expect this to be a part of his recovery and expect more of the same and even more brighter days? Yes, I can handle the truth....

Be careful with the fish oil, my Pandas child reacts to the ALA in it. Big time. Increases tics...One thing that has worked well is Epsome Salt baths. The magnesium is a great calmer. A dose of benedrill or two might help as well...yes...it puts them to sleep (not a bad thing) and yes, (it is addictive if used frequently), but it can lower histamines which is associated with tics. Sorry you are reliving this. I know what you mean...I hate this#### disorder. Remember, you will get though this....As a Pandas parent, you are a warrior. Q

I'm just so impressed with all of you. I started down the gluten free road...and frankly, it is not for the faint hearted! I am a gourmet cook, and when I ventured down the road of giving up things that contained gluten I was shocked! It killed the Julia Child's in me. I went into some sort of "oh my God!", "I can't use ? and ? and ?!" In my heart , I know that all the things that you're all eliminating from your diets is really smart. Even for those whom the effects are not grossly apparent. It is on my bucket list....along with artificial coloring, preservatives, and high fructose.... For the time being, Kudos to all of you!

While I truly believe that Vaccines could reap havoc with children with autoimmune issues, in the big picture, I think if we all stopped vaccinating our children, there would be big troubles....I think very few candidates would fall into the category of "not a good idea to vaccinate".

Taken the right way, I think probiotics make it past the acid....I do use probiotics for my son whom is a little on the odd side of the fence and I have seen wonderful benefits with mood improvement. I have also used probiotics to assist with more immediate issues in myself and family members on several different occasions: stop loose stools from the stomach flu, aide in digestions, all with instant results every single time. If they could not get past the acid, they would have been of no help at all.

Have you thought about getting him a buzz cut? That way you can just run a wash cloth over his head instead of a full wash....you could get a really soft wash cloth as well.

Very interesting..thanks 3bmom

Depending on the age of your child, it can take up to 8 weeks to see a visible improvement. Remember, ivig is not an instant cure. it can take up to a year for its full effect. My understanding is that IVIG is mainly about resetting the immune system and that takes time. They say the older the child, the longer it takes to start seeing some positive results as well. While my son, age 8 did have great and instant results,(his was done 9 months ago), I am not sure I saw what is referred to as turning back the pages. My ds was 100% following the IVIG. Then month four he had a HUGE flare. Lasted about 10 weeks or so from start to back to 100%. Since then one mild flare that lasted 24 hours in which I immediately put him on full abx because I was not going to wait around to see it get worse... I might add that his 24 hour flare was different / less intense. Usually, his past flares were like a bomb exploding. All of a sudden in an instant everything about my child would change: anger, hyper, emotional regression. constant motoric tics and vocal tics. This time it was only motoric tics and his emotional range remained stable. This would be an example of turning back the pages for my child personally. I might add that a recent T/A I feel has been an added factor to his recovery....Right now, the only two things that remain are fear of falling asleep on his own and bedwetting, and interestingly, it was these 2 symptoms that were the first to surface when it all started.....

PTSD.....I think all us Pandas parents have this to some degree. Cara, I can remember one year ago being in the exact place you are. It has been two years now. Despite the great progress we have made, I still find myself looking at both my child through the microscope lens and my knee jerk reaction is OH KNOW!!! I think it is completely normal. I promise it does get better. Last year, it consumed me. All day, All night. This second year, not as much in a pretty big way. As ibcdbwc said so eloquently, you too will reach that point where the panic is not quite so high, and it will be easier to remember "boys will be boys". One of the things that my pandas ds did constantly when in a flare was loud, constant bird shrieks. To this day, every time that kid demonstrates a sound that is in any way similar a chill goes up my spine. The other day, when we were on a play date, his perfectly neurologically sound friend was running around the house making similar sounds...I was reminded again that children just do the darnest things....otherwise there would have been no material for the hit show.... Yes, you will get through all of this...........

Not completely related, but I though I would throw it out there....My ds had constant RLS all day all night since the time he was born....I'm not kidding. When he had his first major Pandas flare, which resulted in 6 weeks of abx, the RLS went away, 100%. Never to return. My thought was that the strep was hiding out in his joints. This is cited as to what occurs with Rheumatic fever and I suspect Pandas. It is also thought because it was able to "hide", this is where all the trouble started and mimicry occurred.

Has a doc landed on a dx for all this nerve pain?

I think it is definitely a good idea to find a Pandas friendly doctor. Even if it does not end up Pandas, the research has yielded a lot of insight that bleeds into many neuro-psyche issues. Much has been learned about the relationship between a unhealthy gut and mental illness. I hate that word...but it covers much. Light has been shed as well about how the autoimmune system plays a role with a lot of the behaviors you described. Many psychiatrist are now running such tests like the "OATS" test before running to psyche meds. Then there is methylation, inflammation, Lyme,....the list goes on and on. All of these things of course overlap. My suggestions to you is to read through a lot of these thread. The forum threads will help to guide in understanding what is applicable to you and your daughter. Most importantly, I think the first thing I would do is find a doc whom is versed on all of this. Best of luck

I get wanting to run all the tests before jumping to IVIG. I agree that it is important to have as much information as possible to evaluate just what exactly is going on. Also, I believe that all Pandas doctors agree that you should always use ABX as long as it works. Dr. K uses the same approach. However, it is his belief that eventually ABX stops working. That is when he turns to IVIG. That was our journey/experience and what led us to IVIG. Unless current belief has changed, IVIG is also considered a Big picture treatment. While it does provide for some an instant remission, IVIG does take up to a year or more to do it's "thing" in the way of maturing and resetting the immune system. It has been about 9 months since we did it. We did experience instant remission that lasted for almost 4 months. My ds did have one big flare month 4, but since then, he only had one flare and it hardly registered on my radar and lasted only 24 hours. That is what Dr. K has said to expect if all goes accordingly with IVIG. I think the t/a also lended itself in helping my ds.