sf_mom

You may see an increase in symptoms after steroid burst. I know with our Son we have seen a slight increase in his symptoms and were very concerned. We were only on a 5 day burst as a diagnostic test with Dr. K to see how he would respond to IVIG. So, he is 90% better but not completely. My concern is that he is still having low-grade response and damage to his 'brain' is ongoing. My perspective with our Son is why wait? BUT, because our younger son had Kawasaki's and treated with IVIG and I've had IVIG as part of fertility treatments the thought of it is not at scary for us.

The cough is considered a TIC and usually the first presentation. If you look at Dr. K's information on-line about PANDAS the cough is common in PANDAS children. My son was doing the same, cleared up after steroid burst but he is now clearing air through his nose without the cough into the crook of his arm.... 'so a new tic'. Once in a while, he clicks his teeth together or rising his eye brows. The average person wouldn't pick up on it but its definitely there and more present when he is tired, right before bedtime.

I sent you Kathy's e-mail at Cunningham's office in a private message.

I think as long as its been spun and stored correctly....... it should be fine. I'd e-mail Kathy at Cunningham's office to confirm. -Wendy

Wishing you all the best until you can get proper help. We'll be in Chicago getting IVIG with Dr. K on the 16th..... Hope to see you there -Wendy

Please read my comments in the other thread. It seems like the steroids use might be effecting your results..... I would focus CaM Kinase % only. It is also my understanding its fairly difficult to get rid of tics entirely with IVIG. My son's immune system is very taxed and we may need to consider more than one round of IVIG.

We received results today too.... Here are my son's. IT IS MY UNDERSTANDING that these numbers might be skewed if your child has recently completed a steroid burst. My son started his burst August 13th and blood draw was August 24th, 11 days after starting steroids. IT IS ALSO MY UNDERSTANDING that the Anti-Tublin relates to tics which is elevated for my son and he has TIC presentation. IT IS ALSO MY UNDERSTANDING that Anti-Dopamine relates to the OCD Behavior which my son also has OCD presentation. If someone is a little more educated please feel free to correct me if the above statements are wrong. The most important result is the CaM Kinase % levels and we have yet to receive those numbers but suspect we will in the next couple of days. RESULTS AT TWO HOURS Anti-Lysoganglioside: 80 Normal Anti-Tubulin: 2000 Elevated Anti-Dopamine 1: 1000 Normal Anti-Dopamine 2: 2000 Normal

This is very interesting..... further confirms my need to find a great SUPPORTIVE immunologist.

Wow, that is interesting about the mirror writing. I know younger kids sometimes mirror write...so maybe he is regressing to an earlier age? Actually, I remember my dd mirror wrote her name the summer b-4 kindergarten, and it freaked me out. Now, I don't know if that was low grade undiagnosed PANDAS or just a normal thing at her age? She didn't do it regularly. Our dd has an issue with margins (in addition to overall bad penmenship). Last year she would start a paragraph at the left side of the page but each subsequent line would start a little more right...so by the bottom of the page everything was squished all into one little area. This year her margins are more random...each line is in a different spot, not a clean slant from left to right like last year. Weird. She also still has problems with reversals (letters, not whole words like mirror writing), capitalization, putting periods at the end of sentences, etc. She also is an absolutely terrible speller. She had some fairly extensive psychological/educational testing and we don't really have a clear diagnosis/explanation (but of course, it could be PANDAS!). She also can't remember math facts...although her general memory tested fine. One thing we've noticed that copying (eg copying from a paper or the board) is much more difficult for her (and puts much more strain on her system) vs. just trying to write down something coming from her own head/her own thoughts. Apparently the process of copying is really difficult for her. For example, she will very badly miss-spell "thousand" on her math homework b/c it is too hard for her to copy that word from that same page! Can you imagine how hard it is for her to copy several paragraphs from an overhead (like 4th graders are expected to do in her class)? yuck! By the way, its my perspective that they suffer much longer than we are aware. The handwriting thing did happen until after his illness in June. He wrote his name perfectly 'always a good writer' prior too. It freaked me out also and that is why I took notice. BUT, again didn't understand its importance until after speaking with Dr. K and then I started digging through his stuff from July and remember ALL the drawings with it that way. I have a feeling my son might be at the very beginning phase of PANDAS. Dr. K was very encouraging with regards to his age and presentation.

Wow, that is interesting about the mirror writing. I know younger kids sometimes mirror write...so maybe he is regressing to an earlier age? Actually, I remember my dd mirror wrote her name the summer b-4 kindergarten, and it freaked me out. Now, I don't know if that was low grade undiagnosed PANDAS or just a normal thing at her age? She didn't do it regularly. Our dd has an issue with margins (in addition to overall bad penmenship). Last year she would start a paragraph at the left side of the page but each subsequent line would start a little more right...so by the bottom of the page everything was squished all into one little area. This year her margins are more random...each line is in a different spot, not a clean slant from left to right like last year. Weird. She also still has problems with reversals (letters, not whole words like mirror writing), capitalization, putting periods at the end of sentences, etc. She also is an absolutely terrible speller. She had some fairly extensive psychological/educational testing and we don't really have a clear diagnosis/explanation (but of course, it could be PANDAS!). She also can't remember math facts...although her general memory tested fine. One thing we've noticed that copying (eg copying from a paper or the board) is much more difficult for her (and puts much more strain on her system) vs. just trying to write down something coming from her own head/her own thoughts. Apparently the process of copying is really difficult for her. For example, she will very badly miss-spell "thousand" on her math homework b/c it is too hard for her to copy that word from that same page! Can you imagine how hard it is for her to copy several paragraphs from an overhead (like 4th graders are expected to do in her class)? yuck! M.T. said she had seen the mirrored writing before with PANDAS patients. I also just got what looks like preliminary results from Madeleine in two areas his antibody titers are elevated but in two areas he's within normal range. He was tested on the 24th so after antibiotics and steroid burst which I understand can impact results. Do you know how to read this stuff? Do they send a summary that references CaM in normal kids verses PANDS with %s?

EAMom Thanks for all the information.... I've responded to your PM. I'm still trying to figure out the forum so if you don't see my response... let me know. When my son was at his worse, he was actually writing his name backwards in a mirrored fashion. So, if you held his writing sample up in the mirror it read correctly. I had numerous examples but threw many out not understanding the potential importance at the time. I did find two examples though and have forwarded them to his Dr.'s. Its scary what this does to the brain. My son barely knows how to write at this point and never wrote his name in that fashion prior to being sick. Again, my younger son had Kawasaki's at 5 1/2 months old and he made such an amazing turn around with IVIG. BUT, it took his heart ventricles almost a year to repair. I'll be interested to see how she is doing 6 months, year.

EAMom, Its so nice to have people close by that are going through the same thing! The immunologist is in SF out of CPMC - Dr. Kwong-Pounce. Because we moved down the Peninsula less than a year ago, I have not switched Dr.'s yet. Our pediatrician seems open to listening and researching. He was a little hesitant when I spoke about ongoing antibiotics. I figure if I can't get him on board, I'll find another Dr. and have one referral of somebody who has dealt with PANDAS. Who is your psychiatrist, M.T? She is ours and willing to talk to our Pediatrician. Have you found a supportive immunologist? How is your Daughter/Son doing after IVIG? Have you seen improvement 3 weeks post treatment?

Kelly, I should have clarified Palo Alto, CA near Stanford University..... suburb of San Francisco. -Wendy

Thanks everyone for the warm welcome and for your words of support. Looking back, we don't think this was the first episode for our son........ at 4 1/2 he had a similar clearing of the throat/tic for several months and after three visits to the Dr. to rid him of it (only five day course of antibiotics perscribed) we were told it was just a 'habit'. I've spent hours upon hours researching PANDAS on-line and ran across a blog posting on some website of Diana P's and e-mailed her. It turns out she lives only about 2 miles from our house and our children are in the same school district. She was the angel, I prayed for when my son got sick and huge advocate behind my sons immediate assistance. She even gave me her sons Dr. appointment!!! I've been leaning on her a lot and don't want to be a 'pain in the rear'. So I'm praying, worrying, stressing, investigating, posting......... ANYTHING to help ease the worry, find a solution and build confidence that this will work. Our sons, blood work was mailed to Madeleine Cunningham on the 24th and we are awaiting those results. He failed 11 of the 14 Serotype for the Pneumococcal Antibody Titer and still hope to test his IgG subclasses. Two other pluses: My father-in-law is a Urologist so 'he gets PANDAS' and our younger son had Kawasaki's at 5 1/2 months old. We saw an amazing turn around he took in less the 24 hours after IVIG. So, we know how beneficial it can be. Again, I'd love to hear success stories. Dr. K seemed hopeful for IVIG even with the TIC presentation but it would be nice to know if others have had success also. -Wendy

Oops, forgot to add, we were living in SF and moved to PA area just a year ago. -Wendy

Thanks for responding. My son had both, he starting out with rapid eye blinking, clearing of throat, an inability to sleep immediately after high fever sore throat for 4 days. Within a week, he was shrugging his shoulders, head tilting to left, flicking back of ears, clearing of throat, grunting, eye blinking, sneaking off to wash hands, plucking hair, had to wash hands prior to touching baby blanket and couldn't touch anything in between, very concerned about other germs, separation issues at school/camp no previous problem, inability to fall asleep, lengthy nighttime routine, needed constant reassurance, night waking, complaining of joint pain every morning, writing name in a mirrored fashion...... May have missed a few symptoms. My fear is..... I have heard that IVIG hasn't been as helpful with the presentation of both TICS/OCD. Currently, he is about 90% better but I'm starting to see symptoms increase slightly as the steroid burst wears off. Any perspective would be helpful and thanks for the welcome. Wendy

Our 5 1/2 year old son took ill on June 24th and its been an unbelievable roller coaster ever since..... I'm exhausted, frustrated and worried! He started 250 m.g. Azithromycin August 8th and completed a 5 day steroid burst August 13th per Dr. K. He did well on the steroids but I am noticing minor tics increase again. We are planning on doing IVIG September 17th with Dr. K. I've had such conflicting information from different Dr's and just got of the phone with an Immunologist who wanted to see my son get sick again, test positive for strep or no antibiotics and have a more severe presentation of TICS/OCD before she would concur PANDAS diagnoses!!!!! She has sent this recommendation to my son's pediatrician and meanwhile this is the first PANDAS child she has ever seen in her office. His titers were 244 at peak of illness, 205 as he improved and is at 206 with negative Anti-DNase B Titers as of last week. Right now, I could use any positive stories regarding IVIG!