Well, that was a disaster...

[StillHopeful]

Hi -

 

Just a quick background -- DS12 (7th grade)has probable PANDAS for 4-5 years. We only recognized them as PANDAS in the past year and just recently saw Dr. T (after going to a bunch of other doctors that couldn't/wouldn't help - you all know the drill). Current symptoms, motor/verbal tics, contamination ocd, anxiety, learning issues, lots of sensory issues, etc... Don't have bloodwork results yet. DS takes SSRI, Z-Pak, Advil, Abilify. He has a 504. This year he is on homebound instruction due to anxiety, tics and sensory symptoms. Probably has some sort of perfectionism thing happening too.

 

DS has not been in school since the first week of Sept. He can't read or write properly. He can not concentrate properly. Finally, after many weeks of trying and after giving him a small dose of adivan I was able to get him to work with the teacher who came for his homebound lesson. The teacher had already been to the house 2 times only to be sent away since DS would not participate. DS was obviously distressed during the lesson and refused to read. He tried a little and you could see he was rubbing his eyes and said it was blurry. He asked to do grammer and the teacher obliged. The teacher happens to be very nice and understanding. Most of the lesson was circling and underlining the right answer. DS was not as sharp as usual but he did it. When it came to writing sentences he started to cry and said "That is it, I cannot do this!" and ran upstairs. This is only after 20 mins. He then yelled down a few swear words and told the teacher to leave. (Oh joy!) The teacher gave him some hw to do. It is reading a short story and typing a short synopsis. Also, he needs to finish the sheet they were working on. I do not see this happening at all. How can you teach a person who can not read, or understand what is being read to him? He also refuses to allow me to read to him. OCD? He is getting so behind in school I do not know what to do.

 

Do any of your children have the similar symptoms? What did you do? Also, for anyone that is homeschooling (not homebound)- how do you set up a curriculum so that it works for your child but also allows them to take the right classes so they can transition back into high school? Don't realy want to do homeschooling but I may not have a choice if this continues and it still won't address any of the issues I mentioned.

 

Thanks you very much!

[Missmom]

If you could, please expand on what dr. T. said. Did he write the prescriptions for the abilify, and or the z-pack, etc... Did he come up with a treatment plan for you to follow. What about bloodwork? Did he confirm pandas? Just curious why only a z-pack. It sounds like your poor son has been dealing with this for quite some time and will definitely need more than a z-pack to get him on his way. My son had at least two episodes when he was younger which went into complete remission with antibiotics, but then the third episode hit and it was much worse and harder to get under control. Luckily we were on top of it pretty quickly and are currently trying to manage it with long term augmentin. I have no idea how bad he would have become if we had not been able to get it under control early, but I suspect it would have gotten pretty bad, pretty quick. He has tics, anxiety, OCD-germs, sleep issues, hyperactivity, and fidgety. He is also twelve and in seventh grade. The augmentin seems to control all of this, but when I try to reduce the dose it all starts to return. I am scared and nervous about the long term antibiotics, but then I consider the alternative.

 

I know right now you are worried about his schoolwork, but that will all be ok. You just have to focus all of your efforts on getting his symptoms under control for now. It may take long term antibiotics, it may take ivig, or pex, or even a combo of these. Each child is different, but I think your son will be able to catch up on anything and everything once you see his anxiety, OCD start to improve. Our doctor even said most pandas children are extremely intelligent and academically gifted, they just have too much stuff going on in the brain to focus, but once treatment starts to work then they will be fine. It should be easy for them to catch up. So for now just accept what he can do and try to keep it as stress free as possible.

[JuliaFaith]

double-post - sorry!

Edited November 17, 2012 by JuliaFaith

[JuliaFaith]

Have you looked at thyroid issues? Anxiety can increase if there are issues here.

 

Also, was just reading about Phodphatidyl Serine (on this forum) as a neurotransmitter support and thinking that my son (who does online school at home) might need to be back on something that like after recent flair. TravaCor was what he was taking for the 1st month after the flair and since I could not get it again (dr. office was moving and for some reason no one knew where to get more) forgot about it but he is not wanting to do math and writing now, whereas, before flair he was more willing to do so. It might give some support for school activities.

 

Also, went back to PANS dr. again yesterday and she recommended Ibuprophen, in addition to short-term abx, to help with inflammation now. She told us to try it for 3-5 days and if improvement, to continue using it for a while. Was a bit helpful at the beginning of Flair but thought he did not need it anymore because of other anti-inflammatories that he was taking. We also use lots of probiotics with these, of course, to help with gut.

 

Also, have you tried anti-parasite treatments at all? This helped to almost rid of son of loud, angry outbursts and were part of the beginning of treatment with Natureopathic doctor.

 

The school thing is such a double-edged sword! Our school district offered only 2 hrs. of instruction a week so I decided to do an on-line free school. It is the most difficult thing ever! My son has been so ill during this time, it is tough for him to learn because of problems in his brain or feel good enough to even want to learn so I really feel for these kids. Now that my son is in 9th grade, if he does not pass a class, I figure he can just take it again. No big deal. But in jr. high if he did not attend a certain # of hours and attend his on-line school I could be held legally responsible and have to appear in court to explain it. Had no idea how that would have worked! Struggled through it but it was really tough on my son. It seems some parents on this forum have been able to, somehow, get their child excused for 1/2 the school year while starting treatment. Hopefully, they will chime in with some ideas.

 

So glad you have found a direction and hope the healing continues!

[StillHopeful]

Hi --

 

Just to be a bit more clear, Dr. T prescribed the Z-pak as a temporary measure since I told him it would be a while for me to get the blood draw done (needle phobia). He thought that it may help bring down some of his symptoms along with the advil. We are waiting for confirmation of the diagnosis. The psychiatrist prescribed the abilify (which initially worked for several months and then he flared and we increased it) and zoloft. He was taking a higher does of the zoloft and I recently tapered it down because it wasn't effective and I thought maybe it was making him worse (as discussed on this forum). Abilify is 3 mg.

 

I know I should relax a bit more about school but I am concerned. He was in two honors classes and taking Italian and he may have to give those up. I feel so bad for him. All he wants to do is play on his computer. He says it is the only thing that makes him feel good. Then, I feel guilty for letting him play on his computer all day and not do any school work but he really can't do much.

 

JuliaFaith, what are the on-line classes that your son takes? We had a note from our doctor regarding my son's diagnosis. Officially is TS co-mormid with OCD, sensory dysfunction and anxiety. The SD offered us 2 hrs of each class per week which he hasn't been able to take. So far he is owed about 30 hours.

 

BTW -- A new symptom occured just hours ago -- separation anxiety. I was going to a TS association meeting with my husband tonight and my DS would not let me leave. Haven't seen that symptom in about 3 year. Great.

[rowingmom]

He can't read or write properly. He can not concentrate properly.....DS was obviously distressed during the lesson and refused to read. He tried a little and you could see he was rubbing his eyes and said it was blurry.

I really don't have any experience at add, but try searching "convergence" in the forums at the top right hand corner of this page. There has been some discussion lately on PANS kids with convergence insufficiency (eyes not focusing properly) and trouble reading smaller print. Your description just rung a bell.

[MomWithOCDSon]

StillHopeful --

 

We were in a very similar spot to yours 3 years ago; DS could not attend school and had some homebound instruction, but he truly couldn't focus on anything or work without freaking out for more than 20 to 30 minutes at a time during the worst of it. He, too, felt most comfortable and at peace at his computer, playing games or just messing around. So we took to interspersing school work and computer time, breaking the work into manageable pieces. But even then, he of course fell behind in terms of the school work. He was also 12 and in 7th grade, and after having been in the gifted program for the last 3 years, we weren't sure he would even be able to move on to 8th grade with the rest of his class.

 

Now, here's the good news. Once we got his medical condition under control, he caught up and then some. Our kids are so bright and so anxious to do well, once we get the inflammation under control and they can regain organized use of their brains for longer and longer periods at a time, they make up for lost time and material very quickly!

 

So try not to get too hung up on the school/education piece of the puzzle at present. I know it's hard because the capable student you used to know seems to have exited the building. But when you get the condition under better control, he'll be back, even if only for short intervals at first. Put your focus on solving the puzzle and getting some real medical intervention for him. I will say, in our case, Abilify made our DS worse (activated him), so you might want to keep an eye on that.

 

In the meantime, I would suggest doing just enough school work to keep his head in the game some, increasing the amount of work he's taking on according to how well he can handle it. While you don't want to exacerbate any feelings he may have of failing at the school work or getting too far behind, you also don't want him to entirely forget what it's like to contend with some academics, and since success can breed success, conquering small pieces along the way will help him.

 

Hang in there!

[Missmom]

It sounds as if he is flairing from something right now. Is he feeling bad at all. Any signs of illness? Just a thought because with the separation anxiety just "popping up" there must be a reason. My son recently got flu and although he came through it ok, his tics did start to increase 2-3 days before the flu symptoms actually hit. Just keep an eye on that.

[StillHopeful]

MomwithOCD your story made me feel a lot better. One of the concerns I have is that he is falling out of the habit of doing school work. So I think I am going to start introducing a few mins a day and work our way up. I will also keep an eye on the Abilify. It certainly isn't doing anything to help. I suppose that when we get the blood work back Dr. T will give us a plan.

 

Rowingmom - I did take him for an eye exam in Oct and the doctor said he had convergence disorder but I am a bit skeptical plus he only did a partial exam and said we had to go back. He also wouldn't tell me how much the therapy would be until we had the second appt. That sort of turned me off. I think is vision issue may be a symptom of PANS/PANDAS. I am wondering if it will improve when he is on the right medication. If not, I will address it. He had been tested for conv disorder before with a "traditional ophthalmologist and she said his near sighted vision is normal (he wears glasses occasionally for distance) with no other issues. So confusing.

 

Missmom - I will keep an eye out for another flare. I am hoping it was just the stress of yesterday and the ativan I had to give him. Drugging your child for an English lesson certainly seems ridiculous.

[JuliaFaith]

JuliaFaith, what are the on-line classes that your son takes? We had a note from our doctor regarding my son's diagnosis. Officially is TS co-mormid with OCD, sensory dysfunction and anxiety. The SD offered us 2 hrs of each class per week which he hasn't been able to take. So far he is owed about 30 hours.

We go thru www.K12.com. They have a pay program and a free program in our state. Not all states have it but you could check it out. They have part-time and full-time options.

 

Getting school work done has been difficult for my son as well. We have come to an understanding that he will do as much as he can for that day and each day is different. Have tried to break it up but he does not want to do that. So, I try not to place restrictions on when and what he does up to the end-of-school day point. He still has to read LA at night and we go over what he has accomplished every day. With a 504 the teachers have been really understanding when he wants to take tests on the weekends and the majority of his school work can be done at his own pace. He usually does school work 7 days a week because of how he feels. When he has a flair on top of his daily flu-like symptoms it really gets tricky. With him at home, also allows me to work with him in different ways to get him thru his classes (i.e., reading to him; writing down his answers etc.). At this point all I expect/hope for is that he passes his classes (it is high school so the worst that can happen is that he has to take the class over). School is a HUGE stress for him on top of feeling poorly every day for over 2 years.

 

Have asked my dh to be the 'school police' on the weekends to give me a bit of a break. It is his job to get my son going on school and then I can step in as the 'coach.' Still some training to do but it has taken off a huge bit of stress for me at least 2 days a week. When my son has been feeling a bit better, this is much less of a job and he is more motivated to jump in and start without a word from anyone.

 

Hope you find some answers soon to get your son in a better place!

Edited November 19, 2012 by JuliaFaith

[MamaOnAMission]

Very very similar situation. My girl does NOT resist learning she CAN'T learn from someone teaching her. How can she with a million intrusive thoughts and severer OCD. I just learned to go with whatever thing she wanted to try and stopped trying to squeeze water from a rock. I had no choice. Whatever makes her happy and less agitated I do it. She is so very sick, why wouldn't I. Anyway...she teaches herself and its amazing how smart she is with no formal learning and all her confusion. I focus on getting her well and I let her enjoy whatever interests her at this point. Perhaps someday things will be different. I kind of went off on a tangent, but I hope it helps!

[StillHopeful]

Thanks Lilly sounds like you are doing the right thing for your daugher. It is not easy.

 

JuliagFaith -- I looked at K-12. They don't have a public school program here so we would have to do the private school. Because he is not cooperating (or can't) I am going to hold of until we find out what Dr. T says and switch up the medication. Maybe that will help. Thanks.

[JuliaFaith]

JuliagFaith -- I looked at K-12. They don't have a public school program here so we would have to do the private school. Because he is not cooperating (or can't) I am going to hold of until we find out what Dr. T says and switch up the medication. Maybe that will help. Thanks.

The first time I looked at K12, I thought they only had the private school too. You probably checked it out more thoroughly than I did.

 

Hope you get some answers from Dr. T.