sudden nightmare with Gaby yesterday

[anne]

EA Mom,

Thank you for replying so quickly. My son has been on the Lexapro 10 mg for about 4 years. We did try and take him down off of it once, but he didn't do well at all. OCD was worse, he was anxious and irritated very easily. So we got him right back up to the 10 mg again. He said he never wanted to try going off of it again, didn't like how he felt at all. So, I guess I will check with his doctor about trying the Inositol with the Lexapro. Everything I have read on the internet doesn't say there is a problem, but still wouldn't be a good idea to not ask the doctor. What I am hoping is that the Inositol will work really well, enough to start decreasing the Lexapro without problems. Maybe it is wishful thinking on my part. I'll let you know how it goes if we decide to give it a try. My daughter who has some OCD is using Inositol the last few months, and has told me it works great for her. She isn't on any medications though.

 

Thanks again,

Anne

[pmoreno]

I had tried the inositol for a few days before Gaby had her meltdown at school and then I stopped because I wanted to just see what was causing this. I'm think of eventually starting again. I can't imagine that it could have been the cause of her change in behavior because I've read that it usually takes at least a couple of weeks for the inositol to start working. Anyone know about that? Also, I had considered 5htp, but thought I read something about it making some kids more agitated? Also possibly causing serotonin syndrome - any thoughts about that? Thanks, Pat

[Buster]

Hi folks,

 

Here's a fair article about how macrolides work:

 

http://books.google.com/books?id=UCnIBIVKv...esult#PPA182,M1

 

The short summary is that macrolides (such as azithromycin) affects the RNA's ability to copy a protein. So this doesn't technically kill the step, but rather stops it from replicating. Essentially macrolides rely on your immune system to find the tagged cells and wipe out those cells. Azithromycin and other macrolides hold the replication in check.

 

Now a thing to note is that it looks like azithromycin is stopping other rapidly replicating proteins too. So it is possible it isn't the strep, but some other inhibited copy procedure. I'm still looking into whether azithromycin supresses the copying of certain antibodies. If anyone runs across something here, I'd sure be interested.

 

There are a lot of theories about what causes macrolide resistance, but the short summary is that the copying happens in resistant strains whereas it isn't copied in non-resistant strains. They aren't sure whether something keeps the macrolide from binding/interfering or whether the interference only works on certain protein strains.

 

Dh did read something (he can't remember the details, so this may not be 100% right) about Azith. being being bacteriostatic at "normal" doses but bacteriacidal at high doses.

 

Buster

[EAMom]

Michele, Worried Dad, Pat,

 

Michele....that is weird that you mention your son's visual preceptual problems....my dd is in the process of having that tested. We have several appointments scheduled at UC Berkeley Optometry. We should have the results in early March. The OT and neuropsychologist felt that dd might have tracking and visual perceptual problems contributing to her handwriting/spelling problems (in addition to the fine motor). I don't even know if these problems are due to PANDAS?? I suspect her first PANDAS episode was when she was 4.5 (urinary issues) so it's possible she's had something low grade for a while, causing these learning issues...she's never been a great speller. I don't think her handwriting was worse than other kids in Kindergarten, it is now though.

 

Worried Dad, Pat, Re ADD...I'm wondering if some of Gaby's and Cormac's "spaciness", inability to focus are actually a form (severe? from PANDAS) of ADD. I was reading Daniel Amen's book "Magnificent Mind at any Age" and he talks about how there are 6 types of ADD, different symptoms, different treatments (he discusses natural supplements as well as conventional meds). I don't know if PANDAS ADD is a whole 'nother ball of wax (maybe types 7-10??) but it might be worth looking at some of Amen's info. on ADD. I know he has a book that's just about ADD http://www.amazon.com/gp/product/042518327...;pf_rd_i=507846 which might have even more info.

 

Michele, Amen does mention Adderrall on page 91 of Maginficent Mind at Any Age (may be useful type 3 Overfocused ADD, if using St. John's Wort should combine with a stimulant such as Adderall) and page 86 (didn't work for a child with type 1 ADD). Anyway, this is not my area of expertise, but I did find Amen's information interesting and it is something you might want to look into.

 

Michele...here's a (lengthy) thread on Adderrall, don't know if you already saw it: http://www.latitudes.org/forums/index.php?showtopic=581

[pmoreno]

Buster - interesting information about the macrolides. will delve into that more when I have time. I wish there were more to be done for the viruses (especially herpes simplex 1 which she gets almost every other month). Today I had an appt. in immunology and it was a waste of time - the guy told me that he had read one article about PANDAS - so essentially he knows nothing. He proceeded to tell me that it's rare - they've never seen a kid there that had it - there's nothing that proves that you have it (so the fact that symptoms correlate with illnesses could be purely coincidental in his opinion). and this is here at the "great" UM where they are supposed to have seen all kinds of rare diseases. Well, on to the next appt. with the neurologist at Children's Hospital tommorrow. Hopefully I'll get more satisfaction there - at least their department has done many spect scans on PANDAS kids.

 

On a lighter note, (well maybe it isn't so light for me), With all this chaos around me - I was rushing this morning because of Gaby's appt. and she was clowning around on the stairs - making me a basket case so I ran full force to grab her and with my toothbrush in my mouth I took a hard fall on my face. In order to avoid the toothbrush from impaling my throat I somehow twisted around when I fell and I managed to break two of my toes. I didn't have time to do ice or motrin before I went to her appt. or we would have missed it (for what it was worth). So now I'm waiting for someone to get here to take over with Gaby so that I can go in to the doctor's office and hopefully they'll give me a shoe of some sort to wear so that I can stop hobbling around. SIGH!

[Indigo]

The Inositol that we use is called Cenitol-it's a powder that I mix into juice for dd. I'm not sure how much that is doing, but I know the Seriphos that dd takes is working wonders. You can get it on amazon, btw. Dd ran out of it last week and the doctor sent some more to me and it arrived today. For the days that she did not have the Seriphos she had insomnia again, waking at 2am and being up for the day! She also was more irritable, hyper, and had a really difficult time with sensory stuff. So somehow the inositol, seriphos, and 5-htp combination are working wonders for a month now.

 

I was able to pulse the antibiotic for 5 days off this past month, and then I found out that a little girl in dd's dance class had strep and her sister in the same class also had strep, on two separate weeks. Dd was probably exposed the week before they got sick. So I put her back on the azith for 10 more days and then will try to pulse it again. I wish people with sick children would keep them home for a week at least to let them fully recover from illnesses instead of spreading germs!!! Dd did complain of a sore throat but didn't get full onset of symptoms or do her usual PANDAS episode of raging--I think the supplements helped to offset that response.

 

 

Lecithin did not work for us--I remember it making dd really irritable.

[ajcire]

pmorena, I don't know much about it but I do know that you shouldn't mix the 5htp with some medications. My ds is on the 5htp but is on nothing else other than zithromax.

 

The Inositol that we use is called Cenitol-it's a powder that I mix into juice for dd. I'm not sure how much that is doing, but I know the Seriphos that dd takes is working wonders. You can get it on amazon, btw. Dd ran out of it last week and the doctor sent some more to me and it arrived today. For the days that she did not have the Seriphos she had insomnia again, waking at 2am and being up for the day! She also was more irritable, hyper, and had a really difficult time with sensory stuff. So somehow the inositol, seriphos, and 5-htp combination are working wonders for a month now.

 

I was able to pulse the antibiotic for 5 days off this past month, and then I found out that a little girl in dd's dance class had strep and her sister in the same class also had strep, on two separate weeks. Dd was probably exposed the week before they got sick. So I put her back on the azith for 10 more days and then will try to pulse it again. I wish people with sick children would keep them home for a week at least to let them fully recover from illnesses instead of spreading germs!!! Dd did complain of a sore throat but didn't get full onset of symptoms or do her usual PANDAS episode of raging--I think the supplements helped to offset that response.

 

 

Lecithin did not work for us--I remember it making dd really irritable.

[michele]

EaMom and others,

I also wondered about your child's coordination? My son is doing basketball now. His gross motor skills are so behind. Luckily he is excited they are winning and not picking up on the fact that he has two left feet, he can't dribble and run at the same time. He is afraid of getting hit or bumped so he is always away from the action. The kids won't pass to him although he is usually open. I am glad at age 7 he is enjoying it though and not picking up on anything else.

 

I totally agree on the PANDAS ADHD. I was trying to research it yesterday PANDAS and stimulants. My son had the symptoms for so many years and was untreated because of his age that there has to be damage to his frontal lobes. I went ahead and gave the Adderall XR for a couple days. Teacher didn't see any big change yesterday but she has 20 kids to watch. He just seems a bit anxious to me and kind of wound up. But his temperment was good yesterday afternoon and evening. He had alot of energy and stayed up a bit later. According to the psych the individual symptoms of PANDAS need to be treated seperately with different meds. She said they have seen many cases of PANDAS in their practice and just deal with symptoms.

 

Our OT and school psychologist both did the Berry VMI test on Andrew. He is very low on them. Highlighting lines seems to help him see them better to write on. Lots of exercises can be done to help them. Research visual motor integration disorder online. My son also had to get glassses for one eye straining.

 

I will tell you Dr. T Murphy (Florida) explained to me the ADHD would cause these kids more trouble then any other symptom of the PANDAS. She did say that eventually he may have to be on a tic med like Clonidine and an ADD med like Ridalin. She also told me to get help with the handwriting and vision. She was right on all guesses and that was over a year ago. She predicted everything that was coming down the road. I only wish we could continue to see her. But we are in OH. She gets this disorder like few others do. The only thing she did not suggest was long term prophylaxis antibiotics. She just said to get on them when symptoms arise. Also to get throat cultures when anyone was ill.

 

How are you all dealing with the school? Have you gotten IEP"s? My son only gets OT at school. His IQ is too high they claim. I know he struggles to keep up and is slow to get and keep concepts but because he is no behavior problem there they don't want to get him extra tutoring. They are very vague on gradescales in 1 st grade. They use marks like support needed but say they use that even for new concepts that have not been mastered. I don't know how he compares to others his age because they aren't saying. I think they don't want to tip me off on anything because they know I wanted an IEP early in the year. His teacher is doing alot of 1 on 1 with him which is great but not every teacher will. I am thinking of hiring an education advocate for our next meeting. Anyone done that for these PANDAS kids? Schools just don't seem to get this.

 

Michele

 

Michele

 

Michele, Worried Dad, Pat,

 

Michele....that is weird that you mention your son's visual preceptual problems....my dd is in the process of having that tested. We have several appointments scheduled at UC Berkeley Optometry. We should have the results in early March. The OT and neuropsychologist felt that dd might have tracking and visual perceptual problems contributing to her handwriting/spelling problems (in addition to the fine motor). I don't even know if these problems are due to PANDAS?? I suspect her first PANDAS episode was when she was 4.5 (urinary issues) so it's possible she's had something low grade for a while, causing these learning issues...she's never been a great speller. I don't think her handwriting was worse than other kids in Kindergarten, it is now though.

 

Worried Dad, Pat, Re ADD...I'm wondering if some of Gaby's and Cormac's "spaciness", inability to focus are actually a form (severe? from PANDAS) of ADD. I was reading Daniel Amen's book "Magnificent Mind at any Age" and he talks about how there are 6 types of ADD, different symptoms, different treatments (he discusses natural supplements as well as conventional meds). I don't know if PANDAS ADD is a whole 'nother ball of wax (maybe types 7-10??) but it might be worth looking at some of Amen's info. on ADD. I know he has a book that's just about ADD http://www.amazon.com/gp/product/042518327...;pf_rd_i=507846 which might have even more info.

 

Michele, Amen does mention Adderrall on page 91 of Maginficent Mind at Any Age (may be useful type 3 Overfocused ADD, if using St. John's Wort should combine with a stimulant such as Adderall) and page 86 (didn't work for a child with type 1 ADD). Anyway, this is not my area of expertise, but I did find Amen's information interesting and it is something you might want to look into.

 

Michele...here's a (lengthy) thread on Adderrall, don't know if you already saw it: http://www.latitudes.org/forums/index.php?showtopic=581

[greeneyes48072]

Hey Pat,

 

Could you let me know how it went at Children's. The Dr we saw there was horrible. I'm just currious if you had better luck...

 

Rachel

[michele]

Sorry to hear about your fall. I think you probably have so much on your mind right now. I know I get distracted when I get my mind so preoccupied.

Also, sorry the immunolgist didn't help you. Ours had never had much info on it either but was willing to try the long term antibiotics I asked for based on my research. Hope you have better luck tomorrow. Neurology has never been good for us on the PANDAS front. They are skeptics if it exists. However they can run tests, do blood work and prescribe meds for neuro issues. I pray you find answers. It is like a maize as someone here stated earlier.

Try to put up your feet.

 

Michele

Buster - interesting information about the macrolides. will delve into that more when I have time. I wish there were more to be done for the viruses (especially herpes simplex 1 which she gets almost every other month). Today I had an appt. in immunology and it was a waste of time - the guy told me that he had read one article about PANDAS - so essentially he knows nothing. He proceeded to tell me that it's rare - they've never seen a kid there that had it - there's nothing that proves that you have it (so the fact that symptoms correlate with illnesses could be purely coincidental in his opinion). and this is here at the "great" UM where they are supposed to have seen all kinds of rare diseases. Well, on to the next appt. with the neurologist at Children's Hospital tommorrow. Hopefully I'll get more satisfaction there - at least their department has done many spect scans on PANDAS kids.

 

On a lighter note, (well maybe it isn't so light for me), With all this chaos around me - I was rushing this morning because of Gaby's appt. and she was clowning around on the stairs - making me a basket case so I ran full force to grab her and with my toothbrush in my mouth I took a hard fall on my face. In order to avoid the toothbrush from impaling my throat I somehow twisted around when I fell and I managed to break two of my toes. I didn't have time to do ice or motrin before I went to her appt. or we would have missed it (for what it was worth). So now I'm waiting for someone to get here to take over with Gaby so that I can go in to the doctor's office and hopefully they'll give me a shoe of some sort to wear so that I can stop hobbling around. SIGH!

[pmoreno]

Hey Pat,

 

Could you let me know how it went at Children's. The Dr we saw there was horrible. I'm just currious if you had better luck...

 

Rachel

 

 

Who did you see? We saw Dr. Sivaswamy and she was wonderful - the first neurologist - or mainstream doctor, for that matter - who actually listened to me respectfully and with interest. She said that she had had a few PANDAS patients in the past but was not as experienced as Dr. Chugani who heads a research program for PANDAS and does spect scans as part of this program. He is the one I wanted to see in the first place, but they wouldn't give me an appt. until May. She said she would e-mail him today and try to get Gaby to be accepted into his program - or at least get a scan as soon as possible. Another thing she wanted to rule out, and this only because she felt that the symptoms sometimes look very similar to PANDAS is something called Hashimoto's encephalopathy which can be picked up with a simple blood test and has to do with a thyroid dysfunction. (also an autoimmune disorder). We had her blood drawn today and hopefully will find out one way or another in a couple of days. In the meantime, I am waiting to hear back about the scan. Did you ever see Dr. Chugani or did anyone suggest that to you? Pat

[pmoreno]

Sorry to hear about your fall. I think you probably have so much on your mind right now. I know I get distracted when I get my mind so preoccupied.

Also, sorry the immunolgist didn't help you. Ours had never had much info on it either but was willing to try the long term antibiotics I asked for based on my research. Hope you have better luck tomorrow. Neurology has never been good for us on the PANDAS front. They are skeptics if it exists. However they can run tests, do blood work and prescribe meds for neuro issues. I pray you find answers. It is like a maize as someone here stated earlier.

Try to put up your feet.

 

 

Thanks, Michele

I don't know if it matters what the medical specialty is - there are some doctors that are open to this and most that aren't. I think its because there's no clear-cut therapy that works and, therefore, when a doctor can't treat something - then they say the diagnosis is controversial and it must be something else so they can offer something.

 

Michele

Buster - interesting information about the macrolides. will delve into that more when I have time. I wish there were more to be done for the viruses (especially herpes simplex 1 which she gets almost every other month). Today I had an appt. in immunology and it was a waste of time - the guy told me that he had read one article about PANDAS - so essentially he knows nothing. He proceeded to tell me that it's rare - they've never seen a kid there that had it - there's nothing that proves that you have it (so the fact that symptoms correlate with illnesses could be purely coincidental in his opinion). and this is here at the "great" UM where they are supposed to have seen all kinds of rare diseases. Well, on to the next appt. with the neurologist at Children's Hospital tommorrow. Hopefully I'll get more satisfaction there - at least their department has done many spect scans on PANDAS kids.

 

On a lighter note, (well maybe it isn't so light for me), With all this chaos around me - I was rushing this morning because of Gaby's appt. and she was clowning around on the stairs - making me a basket case so I ran full force to grab her and with my toothbrush in my mouth I took a hard fall on my face. In order to avoid the toothbrush from impaling my throat I somehow twisted around when I fell and I managed to break two of my toes. I didn't have time to do ice or motrin before I went to her appt. or we would have missed it (for what it was worth). So now I'm waiting for someone to get here to take over with Gaby so that I can go in to the doctor's office and hopefully they'll give me a shoe of some sort to wear so that I can stop hobbling around. SIGH!

[/quote

[Worried_Dad]

Hi, Pat:

 

We actually saw Dr. Chugani in March of 2008, when Cormac's symptoms were at their lowest level (waning-wise) over the past 2 years. At that time, Dr. C was conducting a PET scan study for kids with various neuropsychiatric symptoms and we were lucky enough to be accepted into the study. As you mentioned, Dr. C and his staff were the first neurologists we met who actually listened and took our case history seriously. I'll never forget when I told him about the local neuro who spent 10 minutes with my son and told us it was psychogenic: Dr. Chugani just should his head vigorously and said "No, no, no, no, no!" I was so excited and relieved to hear that!!!

 

The PET scan ended up showing inflammation in Cormac's right basal ganglia, even though he was as close to symptom-free at that point as he has been since this all started. (Wonder what a scan would have shown in Summer of 2007 or 2008, when his brain was on fire?)

 

Dr. C really impressed us. But his advice (since Cormac still had the ARF with Sydenham's Chorea diagnosis at that point) was to wait and see if he resolved over time, reserving IVIG as a last resort if things got bad. (And of course, in August 2008, things got incredibly bad.) He never actually mentioned PANDAS to us at that time, though, since Cormac had no OCD or Tourettes-style vocal tics or other "classic" PANDAS symptoms with his original illness. (He called it "transient dyskinesia.") He was awesome about personally contacting our local pediatric neurology dept (who had declined to see Cormac because of a horrible rheumatologist who labeled our son's illness as "not medical" after 2 minutes of observation. Arggghhh!!!!). After 6 months of waiting, we finally got an appointment with them thanks to Dr. C's intervention!

 

We probably would have gone back to him after Cormac's August 08 symptom explosion, except we saw so many people posting about Dr. K for PANDAS, and Chicago is closer to us than Detroit.

 

I hope you have similar good luck with Children's and Dr. Chugani's colleagues. Let us know how it goes!

 

 

Hey Pat,

 

Could you let me know how it went at Children's. The Dr we saw there was horrible. I'm just currious if you had better luck...

 

Rachel

 

 

Who did you see? We saw Dr. Sivaswamy and she was wonderful - the first neurologist - or mainstream doctor, for that matter - who actually listened to me respectfully and with interest. She said that she had had a few PANDAS patients in the past but was not as experienced as Dr. Chugani who heads a research program for PANDAS and does spect scans as part of this program. He is the one I wanted to see in the first place, but they wouldn't give me an appt. until May. She said she would e-mail him today and try to get Gaby to be accepted into his program - or at least get a scan as soon as possible. Another thing she wanted to rule out, and this only because she felt that the symptoms sometimes look very similar to PANDAS is something called Hashimoto's encephalopathy which can be picked up with a simple blood test and has to do with a thyroid dysfunction. (also an autoimmune disorder). We had her blood drawn today and hopefully will find out one way or another in a couple of days. In the meantime, I am waiting to hear back about the scan. Did you ever see Dr. Chugani or did anyone suggest that to you? Pat

[greeneyes48072]

We had seen Dr Majkowsi, after being admitted through the ER. I had heard just a tid bit of PANDAS and she refused to even speak about it. Even though we had a positive strep test at Beaumount, she said she wouldn't even consider it unless she proved for herself via titers that he had indeed had strep. She was using bloodwork taken just 4 days after his positive strep test, and of course all of the levels were within "normal" range, though no one would tell me the levels. She then said she couldn't see us for 8 weeks. When I called two weeks after the ER visit and left her a message indicating he was worse and couldn't even attend school, I never got a call back. Not even to this day...I hope you do much better with them...

[EAMom]

Hi Michele,

 

I would say that my dd's gross motor skills are average. It's her fine motor that is the problem. I don't remember this being an issue in preschool...her favorite activity was picking up those little pieces of confetti ("treasures") they sprinkled on the ground....susposedly great for fine motor. She actually did fine on the Berry Visual Motor Integration, Beery Motor Coordination, and Beery Visual Peception tests. She had lots of trouble with something called the Rey Complex Figure Test (visual organization, planning, visual spatial analysis, constructional skills...). Interestingly, Peggysue's dd had trouble with this same test (also has spelling problems).

 

Of course, it's so hard for me to pin this (all? some?) on PANDAS. I just wonder if these problems should be gone between episodes if it were PANDAS? or is there some residual chronic brain inflammation that is causing this?

 

Re IEP...yes we are planning on bringing the neuropsychologist who did dd's testing with us to the IEP. We're actually due this month (currently her only IEP is for speech)...she didn't qualify for anything else last year (testing done only by school, not our folks at that point, 11/07 before big PANDAS explosion) and didn't find anything significant aside from speech issues. We've just requested to delay the IEP since we'd like to get the results of the Eye stuff first.