New, Worried and Overwhelmed!

[EAMom]

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.

 

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!

[sf_mom]

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.

 

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?

[sf_mom]

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.

 

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.

[sf_mom]

Hi Wendy,

 

My dd7 has had the two day IVIG, three weeks later she had another round, and she is scheduled for round three this Friday. She had severe side effects following the two day treatment but otherwise she did really well. IMO-the second round seemed to really put her over the hump. I would say she is 95% improved.

 

My dd failed 12 of the 14 Pneumococcal Titers and now receives monthly IVIG. IMO-I am so greatful that she is receiving it monthly. She has a long history of illness so I am convinced that one IVIG tx would have just resulted in full blown Pandas the next time she picked up an infection. She is also one of those who gets symptoms from virus' and infections other than strep. We have also seen her symptoms flair when those around her sick.

 

If your child has an underlying immune issue, I'm not sure PEX would be the answer. I have never seen any information on someone receiving the PEX who has immune issues but I could be wrong.

 

You have a great ally in Diana!

 

Sam

 

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

[ShaesMom]

Hi Wendy,

 

My dd7 has had the two day IVIG, three weeks later she had another round, and she is scheduled for round three this Friday. She had severe side effects following the two day treatment but otherwise she did really well. IMO-the second round seemed to really put her over the hump. I would say she is 95% improved.

 

My dd failed 12 of the 14 Pneumococcal Titers and now receives monthly IVIG. IMO-I am so greatful that she is receiving it monthly. She has a long history of illness so I am convinced that one IVIG tx would have just resulted in full blown Pandas the next time she picked up an infection. She is also one of those who gets symptoms from virus' and infections other than strep. We have also seen her symptoms flair when those around her sick.

 

If your child has an underlying immune issue, I'm not sure PEX would be the answer. I have never seen any information on someone receiving the PEX who has immune issues but I could be wrong.

 

You have a great ally in Diana!

 

Sam

 

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

 

Our Immunologist seems to be very proactive. I know a Mom whose son sees the same Immuno and he did not hesitate to start her son on IVIG either. We walked into his office for our first appt (her allergy doc did all the blood work) and the first thing out of his mouth was 'Okay, looks like we need to get her started on IVIG. We'll submit the request to insurance and go from there."

[Suzan]

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?

 

Interesting stuff. DD8 would mirror write her name perfectly at a young age (3? maybe 4). It freaked me out too. I figured it was all normal stuff too but something to think about.

 

Susan

[Megs_Mom]

Hey - we got half of ours back today as well, so I emailed back. They are still waiting ont he CaM levels, so you'll get that soon. Then I talked to another mom (hi Laura!) who said that you'll get a chart back that shows where they are on a scale - from normal to PANDAS to Chorea. We were tested after antibiotics and steriod burst as well, so I understand your concerns! I think we'll have to wait for another week or so to get the "real" results. Meg was high on one, at top of normal in another & middle in 2 others. But I don't think that really means anything until they interpret with the CaM. Susan (Meg's Mom)

 

Quote from SF mom:

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?