tpotter

OK. This is coming from VERY personal experience. We have just settled on a Due Process case that carried on for 3 years, because of exactly what you are describing. It was very, very messy. We brought a 504 plan with us when we moved out of state, and our school district refused to honor the 504 plan. Instead, they created an informal list of modifications (actually in our case, we thought the 504 was in place, but at this point, it became irrelevant.) As a result, there was never any requirement that the modifications be followed, and they weren't. It was a complete and total nightmare. When we moved here, he did not, yet have the dx of PANDAS, but did have 2 other diagnoses, which certainly qualified him. For our Due Process case,we brought in the big guns...big named doctors who testified on our our behalf., but trust me, the case was very messy, dragged on an insane amount of time, very, very costly, and we were forced to place our son in a very expensive private school for 1 1/2 years while we fought them, because he crashed. Get a doctor on board NOW. Make sure you have someone who will definitely support you (the first one we had, who made the dx, did not support us, in the end, and I can't stress that you make sure that s/he does,...really slowed down our case by 1 year.) I don't know who you use, but if you PM me, I will discuss it directly with you. Anyway, you have to get a formal plan...504 or IEP...you decide what is really needed, although for an IEP, he does have to have a qualifying diagnosis...PANDAS can qualify under either Other Health Impaired (OHI) or Emotional Disability (ED). Again, I cannot stress enough the importance of getting a formal plan. And, you will probably have to have a doctor onboard who really knows the disorder. For your child's sake, do not go informal.

I am so glad for you and especially for him!

Thanks everyone for your feedback.

I also just went online to see about any side effects, etc. Several sites said not to take it more than 1 day, & TAKE PSYLLIUM HUSK with it. Apparently, the Bentonite Clay can severely constipate you. What they said was: the bentonite clay basically soaks up the toxins, and then drinking a lot of water, and taking psyllium husk will get it to move out of your system. But, they also said not to take it more than 1 day. I plan to try it on myself, before I try it on my kids (2 drs, including Dr. K. and a chiropractor have both told us that my 17 year old's PANDAS is coming from his stomach. My 14 yo also complains constantly about his stomach hurting when his PANDAS flairs up!) I have a terribly acidic stomach, and have been having to take 150 mg - 220 mg. twice a day of zantac to control my asthma. Any suggestions on brands you've had good luck with would be greatly appreciated.

1) is "systemic" strep contagious? 2) Are PANDAS kids so sensitive as to react even to that? From months of reading posts in this forum, I would answer NO to no. 1, and YES to no. 2., as it seems PANDAS kids react to carriers in the household, who are supposedly not contagious. What do you all think? The answer to #2 is correct. Others (including Diana Pohlman) have noted that some of our kids (including Diana's) do react to a microbial infection (look at her website: pandasnetwork.org) A microbial infection is exactly what you are describing.

I do not know why our kids are not given simple, routine tests for infection before being assigned a mental health diagnosis. It seems to me that there should be a good attempt to rule out medical conditions before assigning mental health diagnoses, and insurance companies should not only cover it, they should DEMAND it. It will save them tons of money and save society a great deal of burden in the long run if we can clean up infections and let kids become fully functioning adults! Count us in on the families that were given mental health labels instead being fully evaluated for physical problems. I think you've hit on the key to all this. Get the insurance companies onboard!!!! Right now, they are fighting us (some more than others), because they don't understand how it will save them money in the long run. BUT, if we all bombard them with info on how it will save them MONEY....

Did anyone notice that since we started voting, Warriors Wish has jumped from 16 to 7th place! We're back at 21, but can't seem to break that 21!

Has the word gotten out about voting? We were down to 21 (from 24 yesterday)...possibly because of the vets.

Vickie, Thanks for everything you're doing. I totally trust what you are doing.

Our neurologist had us tx the dog with a shot of penicillin. Actually, it was our vet who sounded the alarm (he knew more about autoimmune disorders than most of the other doctors we had ever seen.) We had gotten our dog from the SPCA...he was a rescue. Vet said he could have picked up anything. We called our neurologist who then called the vet, and told him what to give the dog. Also, if your dog recently got any immunizations (some are live), it can trigger a response in your child. The bordetella (kennel cough) vaccine is usually live, and definitely gave our son trouble. When it came time for the next vaccine, we went to the vet, and asked him what to do. There happened to be a killed bordetella vaccine that most vets do not give, because some believe it is not as effective. But, in our case, we really had no choice.

What is WMS? And, are we voting for them? Please let us know before June 1 who to vote for, and if we need to leave comments. Thanks for everything you're doing.

GReat find. I am treating a child (OT)...one of her symptoms (that I don't treat, but she is going to see a neurologist about at my suggestion) is that she pulls her hair out. Her mom did the same (grandma is taking care of her...child is only 2 years old.) I'll pass this information on to her!

I never found taking a prophalactic abx twice a week did anything for my ds (we tried repeatedly.) He always deteriorated. He really needed daily (we changed drs.). Just my opinion.

Even though she's not currently sneezing, the toxins are still there. If you wait until she has another episode, you're probably going to have to wait to go through another round of insurance fighting, which will probably take just as long. My son had IVIG first, and within 1 month, ALL the symptoms were back full force. By the 2nd month, with all the symptoms still there (not saw-tooth), we did PEX. My son reports that there were significant differences in the way he felt, too. The PEX lasted a good 6 month. We really are needing to repeat it now. And, even as bad as his symptoms have gotten this time, they are nowhere near as bad as they were when we first did the IVIG and then the PEX...it's been just short of 1 year since the IVIG (but, I also don't want to wait until they get that bad.) That being said, my feeling is that, if you have the option...do PEX first, then do IVIG. Dr. K. says that if you do PEX, you need to follow it up with IVIG within 1 month. I completely agree. Get rid of the toxins quickly, then 1) help the immune system fight what's left, and fight off new infections, and 2) close the BBB. This is just my opinion, but that's also based on the way my son was able to express the difference in how it helped him.

But, there are comments? Doesn't make sense.

I agree with other parents. Try getting a change in abx. We have changed several times over the year my sons have been on. The initially great effects do wear off, as they may be building up a resistance. Sometimes changing to a different abx then changing back later works wonders. Also, have you tried a steroid burst?

I have 10, and will continue to try to get more.

I think it's a great idea.

Both of my children had the same thing...preferred even numbers over odd numbers. My 17 yo still has to have even numbers OR it's also ok if it's a multiple of 5. I have no idea what it is with that, but the particularly odd (pun not intended) thing about it, is that they both developed it simultaneously.

Could some of the problem be Sensory Integrative Disorder?

If he's only 2 years old, have your sister/brother? call the local Early Intervention agency. Since, I don't know what state you are in, I can't give you more details, but you should be able to get the information either from the phone book (look under Early Intervention), maybe the Dept. of Health or the Dept. of Education. They will do a complete evaluation (looking at other possible areas of need, as well.) When treated early, many problems found in young children (including speech) do get dramatically better, if not completely resolve. The key is early treatment, and that is the goal behind Early Intervention. The brain is still "plastic" at this age, and there is so much that can be done to change the way it functions. Trust me...it's not hopeless (I work in Early Intervention as an OT), and I have seen plenty of kids get better. Good luck.

Apraxia is an absence of motor planning. Actually, the better term is probably dyspraxia, because I assume you are referring to "difficulty" with motor planning. Dyspraxia occurs when a person has difficulty figuring out "how" to do something. There are different kinds. One, for instance would be if you had a cup of water in front of you, and couldn't figure out how to get it to your mouth to drink from it (ever). Another kind would be if the cup was there, and someone told you to drink the water, you couldn't figure out how to do it. But, if no one told you to drink the water, and you were thirsty, you would do it automatically. Now, apply that to speech. You can't figure out how to say certain words. Depending on the type of dyspraxia, the same would apply: Either: 1) you could never figure out how to say the words or 2) if someone told you to say something, you can't, but if it's automatic, you can. It is not a form of autism, but it is caused by a problem with the brain (you might see it in Autism, stroke, brain injury, etc.) This is something a Speech Therapist would work with.

A few weeks ago, I had some difficulty getting in with everyone's but mine, for some reason. So, I set it up from scratch, and it let me (new passwords.) Our rank has dropped to 23rd. Yikes...we've got to get this fixed.

I think Dr. B. would be a better option. He's also an immunologist, and knows from that perspective. Also, from our experience (and experience of others), you will continue to have difficulty getting followup from Dr. T, and that will make you crazier. BTW...my boys are also teens, and I, personally wouldn't take them off abx without consulting with a PANDAS specialist. Maybe, you could call Dr. Swedo? Dr. K. would certainly know,too.

Absolutely, the allergy testing could have triggered this. Once PANDAS occurs, anything can trigger it (colds, allergies, flu, strep, etc., etc..) I totally understand "the mouth." I have recently had to walk away myself, when my kids are going off the deep end, because of their mouths. It's REALLY tough. Sounds so behavioral, and of course, afterwards, we all know it wasn't on purpose.