I hate what this has done

[LindaMW]

I hate what Pandas and Lyme has done to our children. Now that it is back to school time all the stress has returned for all of us.

My son so desperately wants to attend school and is so mad that I have to put him in Cyber school. I have tried over and over to explain that he has not been getting a consistent education when he is not able to attend school. All last year he went a total of 8 days and our district put him on homebound. Unfortunately he cannot keep doing that all year, every year. This year we all agreed (school and us) that he would try to go back and if not cyber was our only option. Here we are the first week of school and he only went the first day. He said the ocd and anxiety are keeping him from going. He wants to keep trying but I told him that is not going to work. It breaks my heart because he is now mad at me. I am only trying to do what is right for him. He is 12 years old and just wants a normal life, I understand. Why is this so hard? How am I gonna keep getting through this year after year?

We are now on our third year and still not seeing any improvement. He is currently taking Minocycline and Biaxin, plus multiple vitamins (B12, C, D3), fish oil, 7 of Buhner's Herbs for lyme and brain fog, plus Serrapeptse and probiotics. I don't know what else to do. Our days are already spent taking medicine three times with the herbs and twice with everything else. Plus throw in epsom salt soaks.

I hate this and I and trying to research as much as I can. I read how others have gotten better and I ask why not him, what are we missing?

I am sorry I had to get this out, I have no one who understands. My husband is stressed enough at work. I cannot stop crying this is so, so hard.

[Missmom]

Just wanted to chime in and say that twelve was probably the toughest year for my son. Not only are they battling all of the illnesses and such, but when you add in all of the raging hormones it just catapults into orbit. I must preface this by saying that my son does not have Lyme so I cannot comment on that part of your question, or give you any sort of medicine or supplement advice but I just want to say that I do have hope for your son that it will get better. My son is now 14 and has already had three weeks of school. He is making all a's so far and I am very proud of him. He is still talking antibiotics and his doctor wants to continue with that till he is 15. I hope by then to begin weening him off of them. There is a lot of strep going around at the moment so it still makes me nervous each and every time I hear that word.

[chubbermommy]

I'm sorry this is happening to you. We're not seeing any progress here but for us it's not been too long. Do you think he has another infection that is preventing progress? You are treating for Lyme, but any co-infections? Something that was previously hidden but now cropping up b/c of puberty and lyme treatment?

[911RN]

I hate what Pandas and Lyme has done to our children. Now that it is back to school time all the stress has returned for all of us.

My son so desperately wants to attend school and is so mad that I have to put him in Cyber school. I have tried over and over to explain that he has not been getting a consistent education when he is not able to attend school. All last year he went a total of 8 days and our district put him on homebound. Unfortunately he cannot keep doing that all year, every year. This year we all agreed (school and us) that he would try to go back and if not cyber was our only option. Here we are the first week of school and he only went the first day. He said the ocd and anxiety are keeping him from going. He wants to keep trying but I told him that is not going to work. It breaks my heart because he is now mad at me. I am only trying to do what is right for him. He is 12 years old and just wants a normal life, I understand. Why is this so hard? How am I gonna keep getting through this year after year?

We are now on our third year and still not seeing any improvement. He is currently taking Minocycline and Biaxin, plus multiple vitamins (B12, C, D3), fish oil, 7 of Buhner's Herbs for lyme and brain fog, plus Serrapeptse and probiotics. I don't know what else to do. Our days are already spent taking medicine three times with the herbs and twice with everything else. Plus throw in epsom salt soaks.

I hate this and I and trying to research as much as I can. I read how others have gotten better and I ask why not him, what are we missing?

I am sorry I had to get this out, I have no one who understands. My husband is stressed enough at work. I cannot stop crying this is so, so hard.

If anxiety and OCD are the things keeping him from school...have you tried SSRI's? Yes, all the antibiotics and herbals are great but don't seem to be giving him enough. SSRI's are indicated by most for OCD and anxiety. They are helpful and may help him to be more functional if he truly wants to go to school. Low dose Lamictal has also been helpful for many of the children on this board. Many avoid these medications but many of us have found them to be helpful for our children.

[trintiybella]

The school here was willing to let my daughter come for a couple classes when she was up to it, and then send a tutor too. I am sure you explained the situation to them and your might have thought of this. Perhaps the hardest part for him is not being around his friends, so he could possible do a gym class so he is not feeling so left out. Just a thought...Thinking of you. I know, it really stinks! PM me anytime! :0)

[sf_mom]

Your length of treatment and his inability to attend school after 3 years of treatment makes me think there is something else there...

 

Have thoroughly ruled out mold? Has he been treated for parasites including Babesia? Have you recently rechecked IgG subclasses? Heavy metals?

 

I can appreciate your frustration and sadness over the disease but also know you will keep trudging along. It's probably time to look a little further for the cause of continuing symptoms.

[BeeRae22]

I agree with sf_mom. When was the last time that you changed treatment protocol and meds? If his symptoms are that severe that he can't attend school, I would think that Biaxin and Mino aren't enough.

 

My daughter had school refusal last year, but not as severe as your son. I would try to get permission for something like what trinitybella suggested- maybe he could go to the specials classes each day (art, gym, etc.) to get him going?

 

Is he going to CBT/ERP? Maybe try doing a little of your own ERP? Can you get him to just go to the school, even if he won't walk in? Then get him to walk in, then stay just a few minutes, etc.? What are his fears about school? Is there something you can do to work around them?

 

I'm so sorry you're going through this. I've been where you are emotionally.... keep researching. Push your pandas/lyme docs to try different treatments if it's not working. Keep calling, posting, and asking questions. Hang in there.

[ktdommer]

I also think that the Lyme treatment isn't enough especially with bartonella. Have you read Burroscano's treatment guidelines? When we started with new ILADS as doc some meds were at higher doses. I was amazed and then realized we had probably been under treated. It was IV Rocephin that worked miracles on my son with orals but in hindsight 9 months wasn't enough. I would highly suggest IV antibiotics and do it while he is cooperative. The older they get sometimes the harder it is to get compliance.

everything about Lyme and PANS is awful but here is hope. You are already doing so much. Have you been to LymeNet, a forum, to ask more specific Lyme questions?

I hope you fine answers soon.

[airial95]

If he really wants to go to school that badly, he may be willing to do the work that is required for CBT/ERP. It doesn't work for many kids because they just aren't ready for it - either they have not addressed the medical side of it, or they are just unwilling to put in the work required.

 

We were "lucky" in that my son was so young at dx, our initial attempts at CBT were really more of how we should/shouldn't respond to his OCD (his rituals involved us immensely). Was it hard? Yes. Did it suck? Yes. But because of his age, there was never an issue with him complying. He's almost 7 now and compliance is a non-issue. CBT has just been part of the deal so long he's never known life without it. And it's immensely helpful.

 

If he is willing, it might be time to try it. Having a goal that the child wants to reach (like attending school) is a huge motivator for CBT/ERP.