brooke

My son has SC too and CANNOT wear socks, shoes (other than Crocs), underwear (to my horror), and anything seamed. He will also not wear long pants or long sleeved shirts right now. My son is 8 and it is harder to get away with it. But, I have decided that this is his normal for now. I had never thought it may be SC, which he has a lot of. I had chalked it up to sensory stuff! Thank you for the insight! It makes a lot of sense that it would be SC! Brooke

Our son reacted well behaviorally to prednisone, but he could not handle the 'heart racing". However, he reacted quite well to IVIG!

Interesting, because, my child, in addition to hot flashes and a list of symptoms too long to report now, has the SAME reaction to those things that do no go his way, or when the expectations that he has are not met or realized. I hope that she is going to exit this procedure a "happy-go-lucky" child! Take care!

Does anyone's child get sudden hot flashes, whereby the temperature can be 60 degrees and they complain about being hot? We have checked out thyroid which is normal. So I have to assume it is all part of this disorder. Thanks!

I confess to having given my son, 8 years old and 95 lbs, 400 Advil liquid gels. Does not seem to bother him. Really like the Liquid gels the best.

My 8-year-old son has this too. Some days it is really bad. The antibiotics seem to help though. Does anyone's child have weird hot flashes? "Brain swishes" as my son calls them?? Thanks!

I still have that rx filled, but given my son's reaction to every single medication we have tried, I did not administer it. I have read that for PANDAS it may not be a good idea. I think it increases dopamine, which they already have too much of?

Gosh I feel for you! I feel as though I am NEVER equipped to deal wit my son. We see a behavior specialist, one of the MANY EXPENSES of this disorder, and it really helps me! IT should give you strategies for homework, e.g. "I know you can do this! I will give you a timer to do the first problem and when it goes off, I will come help out". But if your child is just not available, sometimes it is useless. My son thrives on STRUCTURE which I am not great at doing. I still search for solutions, and have many afternoons that resemble yours, and A LOT WORSE if that makes you feel better. My son too goes through those eating spurts, sweets especially. He has such an awful diet that it is embarassing! Hang in there!

THat is fascinating! Thank you for that information. One of my friends has a daughter who was "unofficially" diagnosed with PANDAS last spring, but has now been diagnosed with Lyme. I assume your child he was treated for Lyme? I think to thoroughly diagnose Lyme, you have to have the "Western Blot (sp?)", which most tests do not do? My mouth is agape because of both the list of symptoms and the fact that IVIG helps the body receive the antibiotics. It seems that IVIG helped for us, but the addition, some months later, of antibiotics has made a big difference! Thanks for sharing.

Ditto! I will drink anything right now!

I really think I have it. I have autoimmune issues. Thyroiditis and anti cardiolipin antibody. I had anorexia in high school, all of a sudden. Most people blamed that on my father's death, but it is a symptom of PANDAS and OCD too. Have lots of anxiety, heights especially. I too had chronic strep as a child and had my tonsils and adenoids out at 6. I also had strep with pregnancies, and I need to ask my GYN which pregnancies. Never positive strep throat test as an adult. Brooke

Both are positive per Cunningham. Younger one was the severe onset. Older one has struggled all of his life with ocd/anxiety, and hand flapping. It has not stopped his life like hsi younger brother. But it has negatively impacted it in retrospect and I have not idea what to do? Dr. Latimer met with him two weeks ago, and i could not be there because I was in the er myself. His CaM Kinase was 156. Weird thing that I am thinking is that the two boys cannot get along for 2 minutes. It is almost like they are opposite forces, but I wonder whether they are literally reactive toward one another?? Older one had CHRONIC strep, and has had a number of bouts with pneumonia. Younger, little strep, pneumonia, wicked ear infections, and anal strep (we think). Both have bad allergies too. I have a middle son with no symptoms thankfully

For what is it worth, my 16-year-old was just diagnosed with PANDAS. He is not completely through puberty, but well on his way. IHis case has been relatively mild compared to the severe onset of my 8-year-old who had the horrific rage, ADD, OCD, Anxiety. A lot has improved since we did IVIG in July 09 and started Augmentin. I too had a very difficult time restraining him. He is 8 and weighs 95 lbs, and was up to 100 lbs before IVIG. I have been told that it goes away, or they "outgrow it". I am kind of stumped about what I should do with my older one though. He has OCD/anxiety and tics mostly, and fortunately for him, the ocd has helped with school. I am seriously interested in finding out if I have PANDAS@!

If it is the Cunningham bloodwork, that can take some time. I did the bloodwork for tow of my children in different months. For one of my children, it took about 6 weeks, and the labs were sent to us at home with explanations. For my other child, the result was much quicker, but Dr. Latimer received them directly. Dr. Latimer called immediately with the results though. Good luck! Brooke

My son has been on Augmentin for about one month (875 twice a day). Even though he had IVIG in July, I still think that the antibiotic is working. About a week ago (three weeks after start) we have seen improvements! We had to stop celexa (20mg)! It worked for us too for a little while, but then seemed to make him crazy. My gut would also suggest a reaction to the vaccine. Every single time my son has had a vaccine, symptoms exacerbate. Advil helps us too, but can cause bloody nose for my son. Hope this helps!

I am so sorry! Where are you?? I am in McLean. Would love to talk. I am so weary! What can you do about the refusal? It sounds like such a breach of contact, but I am not a health lawyer. Detrimental reliance on the hospital's part too, not to mention you too. Thanks for the words about PEX. Did the hematologist give you any insight into post-PEX exposure? At this point, I am not sure we will have an option because Georgetown is using the machine for multiple organ donations as you likely know.

We had to take our son out of school last spring for the same reasons. Eventually, his behavior in school became similar to the "meltdown city" that I dealt with at home. They are simply not available to learn when they are in this state. Homeschooling is an option, if you can handle that. (I cannot!) He may not be available to learn until he receives a treatment. How long on the Augmentin? We did an IVIG in July with Dr. Latimer, and my son by September was available to learn in a specialized environment (only 7 kids in his class now). I took my son off of clonodine because it made him soooo sleepy. But that too was after IVIG. We never tried the other med, but it sure was recommended! Where are you geographically?

Our insurance company recently denied Plasmapheresis for my son. While our Doctor is trying to work with the BCBS doctor, I am doubtful that it will happen. (It had been scheduled for this morning, but now that it is 11:00 my time, don't think so!) I am now thinking about doing another round of IVIG, which we pursued in July of '09 and was beneficial. I wondered if anyone had any insights. I confess to being a little skittish about PEX because of the risks, and also my son is extremely sensitive to anesthesia. I have also heard that if you have a positive response to IVIG the first time, a second round is recommended in lieu of PEX. Thanks for any insight any of you can provide. I have been so incredibly stressed about this whole thing, not to mention the stress of taking care of a child with PANDAS as you all understand.

What about placing it is a teaspoon of cream cheese? Or can it be crushed and put in applesauce?

I know all too well those "Quick Silver" moments, and go through those moments every day when I see other boys who seem to have no problems. My son had to leave his prior school because of PANDAS. It is a rare day when he does not cry for that loss and what PANDAS has done to his life. As a "newbie" here, I so appreciate that I am not alone, as much as I cannot stand that others suffer. We too have started high dose antibiotics in the last few months and I can see a difference! Sadly, my oldest child, just diagnosed with PANDAS, is allergic to three classes of antibiotics. God Bless Diana from me too! Where I would be without her, I have no idea! Thanks, Brooke

It took me so long to convince our son's psychiatrist that he was not bipolar. Before we had IVIG, morning was always a nightmare. I can only imagine that is part and parcel of the PANDAS.

We are awaiting in the wings for PEX at Georgetown Tuesday this week if our Doctor can reverse the insurance companies denial. I will look forward to your synopsis. Where was your child's catheter placed? Does your child have any issues with anesthesia? Thanks!

My son's (8 years old) CaM Kinase score taken one month after IVIG was 140. Prior to IVIG the symptom severity was extreme, OCD/Anxiety, hyperactivity, mood lability, separation anxiety. I wish I had done the Cunningham bloodwork before, but we are now awaiting insurance approval for PAX. On Augmentin 875 twice a day. My oldest son (16) recently did the Cunningham test and had a CaM Kinase of 156. His symptoms have been in existence for most of his life, mostly OCD and Tics, but not the severe onset that his younger brother had.