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Sending PANDAS child back to school...


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Im sitting here reading all this and crying. I am right there with you. We're 10 weeks post IVIG but have had strep exposure twice and two loose teeth. It was going well and then at 8 weeks post we had this hiccup. I am afraid to death of sending him back to school. My DH thinks DS is fine with the prophylactic abx but those didn't work at all when ds had the two exposures. Dr K asked me to double up which would've been only 500 mgs of augmentin so I just did augmentin 600 ES twice a day on my own and it helped. We still see a ramp up with new tics, behaviors etc. Whats the point of low dose abx if they don't really work with exposure. I am planning on sending him to school with full strength abx right now.

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Karen:

 

Don't feel bad about feeling paranoid! Man, can I relate to your situation. After 10 months of "Saving Sammy" aug XR, our son is doing far better than he has in 3+ years. We hardly ever see signs of the "nightmare times" now. We should be ecstatic and relieved, eh?

 

What's weird is - like you said - as our son has improved to the point where he's totally functional again, my wife and I have just kind of crumbled. It's like the adrenaline rush ended and we crashed and burned emotionally. We're utterly drained. And - if I see even a momentary sign of the old symptoms - my heart tumbles into my gut and I feel a wave of foreboding wash over me.

 

Rationally, I know it doesn't make sense. And we're still on the high-dose abx, so our son should be protected. But I can't fight the fear when he coughs, or sneezes, or complains of feeling hot or nauseous or lethargic or of resurgent joint / back pain.

 

Our son has now missed 3 years of school. We met with the admin staff and plan to start him back in the Fall with 2 hours a day (he'll be heading into 9th grade - what a rough place to resume, having missed all of middle school!). We're excited, and hopeful... and freaking terrified, too.

 

I think we all do the best we can to help our recovering PANDAS kids reclaim a little bit of their lives at a time. But it scares us as much as them - probably more, because we feel less in control and know how easily an infection could plunge them back into the abyss. And - let's face it - if they sink back into the depths, the whole family sinks with them.

 

Personally, I agree with sptcmom. The prophylactic dose of augmentin was a complete failure for our son. We plan to keep him on the treatment dose of XR for the foreseeable future, probably through the "peak infection" period of Winter and Spring. Nobody who has been through severe PANDAS ever wants to see their child repeat the experience if they can possibly avoid it!!!

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Hi Karen,

 

Like the others, I know exactly how you feel. My cousin holds her PhD in psychology and she's well aware of what goes on in my world. She says that without fail I would qualify for a diagnosis of PTSD. Tomorrow is our first day of school. He wants desperately to go but I know this is just not going to fly. We've had to discontinue all abx months ago because of the train wreck that his gut was. We're trying something new but only 17 days into it and seeing good results but not enough yet to take on the ultimate challenge...school. Anyway, know that you're not alone and I maintain that, given what this group of parents has lived through, your reactions are completely reasonable. I know from our middle school experience that ONLY time brought me to a point of not jumping at the slightest symptom. It took a few years and oddly, this backslide began a few months after I finally let my guard down. I do know, however, that he was going to have this episode whether I stressed about it and kept his life under the microscope or not. You cannot imagine how much I look back on the 6 months before he got sick and am so thankful for the life I had then and the enjoyment I was getting from it at that time. I'm sorry for what you're going through, I live there myself these days.

 

Gayle

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Hi Karen,

 

Like the others, I know exactly how you feel. My cousin holds her PhD in psychology and she's well aware of what goes on in my world. She says that without fail I would qualify for a diagnosis of PTSD. Tomorrow is our first day of school. He wants desperately to go but I know this is just not going to fly. We've had to discontinue all abx months ago because of the train wreck that his gut was. We're trying something new but only 17 days into it and seeing good results but not enough yet to take on the ultimate challenge...school. Anyway, know that you're not alone and I maintain that, given what this group of parents has lived through, your reactions are completely reasonable. I know from our middle school experience that ONLY time brought me to a point of not jumping at the slightest symptom. It took a few years and oddly, this backslide began a few months after I finally let my guard down. I do know, however, that he was going to have this episode whether I stressed about it and kept his life under the microscope or not. You cannot imagine how much I look back on the 6 months before he got sick and am so thankful for the life I had then and the enjoyment I was getting from it at that time. I'm sorry for what you're going through, I live there myself these days.

 

Gayle

 

 

My son just came off of 4 months of Azythromycin at the begining of June. He is 13 and this is the first time since he was 7 that he has had break from Pandas. We live in Johnson County Ky and he has a medical card. However, no doctor around here has heard of PANDAS or beleives in it. It took me forever to get him the antibiotics that he needed and that was because I kept demanding to be referred to other doctors. When we finally got the antibiotics it was a fluke. I thought we were being referred to an immunologist and when we finallly got to Ashland, KY it was an Asthma and Allergy clinic. I broke down and started bawling. I explained to this doctor what had been going on and about Pandas and how I couldn't get anyone to help my son. He told me that he had never heard of it but because my son had repeatedly tested positive for strep after normal 10 day rounds of amoxicillin he would give us a 4 month prescription. It worked all signs of Tourette's and OCD are gone completely! Thank you Lord.

However, he will be returning to school on Wednesday. (8th grade) I am expereincing the same anxiety as you. I am absolutely terrified of what is going to happen to him when he comes in contact with strep again. Right now he is on no medications whatsoever. I fear that I will have to go through the same chaos of trying to get referred to doctor after doctor before someone will listen, again. And I can't stand the thoughts of my son having to go through all of this crap again. 6 years is such a long time to be locked up inside yourself. We are a low income family and when you don't have the money to get anywhere and no one near you will listen things seem hopeless. I really don't know what to do. All I know is I finally have my son and I don't want to lose him again. I know I can't lock him away that wouldn't be fair to him but thats what part of me wants to do to protect him. As I set here writing and thinking about it my insides are shaking. I am just plain terrified and I don't know how else to explain it.

Misty

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Hey Karen (and Misty),

 

Do you think it would help if you were doing something prophylactic in nature? Would that help ease your mind that you are giving him an edge and not just sending him back as just another kid who may or may not contract a strep when it passes through? I'm not necessarily suggesting an Rx antibiotic but how about olive leaf extract (a natural antibiotic/antifungal/antiviral)? Also keep in mind that you probably have other protocols in place that will give him an advantage over his peers when it comes to contracting anything opportunistic...like exceptional probiotics and a good multivitamin not to mention other pieces of your protocol designed to address immune function. Try listing (in writing) the things you do to assure his safe passage through strep season that you never knew to do in your pre-PANDAS life.

 

Gayle

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OMG!!

Ilove you all

I am a ball of nerves

ALL we can think about is her starting school again

will it be ok?what am I going to do if she can't make it

and all of the PANDAS comes back?I will need to home school her

I DON"T WANT TO HOME SCHOOL HER, I am a stupid person!!

I think I will do ok until 3 grade.I just cant deal

BUT I will,I will have no choice. I will not let her down.

Think positive!think positive!! that is all I can say to myself and to Doug

We have been in heaven for almost 6 months she had done so good.

Do I up her azith? for the first 2 week's? I need to ask Dr.k

We were at a friends house a couple of day's ago Friends?? yes I still have a few that

don't think WE need to be on med's,but her little girl said that she had a sore throat

and we were out of there so fast,but I will NEVER know at school until it is to late

and then will just uping her abx's will that do the trick??

we know her signs,so we will just need to rely on that and go from there.

WOW,I think I need to keep away from the coffee for the rest of the morning!!!

 

Tracie

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I have to admit, I am slightly worried too. My brain has lost the capacity to respond fully, the way I used to to this disorder- blown fuses, no more stress response due to the years of stress and anxiety over this.

 

My son will be starting at a new school as we have moved. Get this... we moved back to the town where he first caught the really bad Strep!! I am going to try to get some things under a 504, including notification of strep in the school. We just have to maintian a positive outlook everyone, and hope for the best. I started my son on supplements to help his immune system. We are spending the summer trying to get him healthy and fit. He is on a strict diet- no free sugar, no unhealthy fats... just raw and steamed fresh vegetables and whole fruits, and a little meat that is clean, and fish. He has lost some weight, and has two hours of exercise every day. Our doc told me that at any time he acts sick, to get strep culture. He will order any antibiotics if he needs. I am confident he'll be ok.

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I just want to encourage everyone to go ahead and get the counseling that you need. (And possibly antidepressants or supplements, if necessary.) It has helped me tremendously. I went into therapy and told the therapist that my goal was not to ride the up and down waves that my son rides. I needed to disconnect my mood from my son's so that I could respond thoughtfully and calmly. I'm not saying that I'm always as calm as I wish I could be! But, it has helped.

I understand what you mean about school starting back! The exposures as well as the stress to "appear normal" is so hard on our kiddos. My son is usually so wiped out after the school day. Ugh. I hate homework!

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I can totally relate, this illness is an autoimmune disease and with that comes the relapsing remitting symptoms. My dd at age 7 had sudden onset pandas, recovered dramatically, at 9 another attack left her ill for one and a half years. After steroids and abx recovered again. Then at age 12 overnight again, we are one year from the last attack and now after 8 ivigs I am eating, breathing and sleeping again. This disease is scary! Very scary almost paralyzing. Its a mothers instinct to protect her child. Sending them back to school for me provokes a response of fight or flight. I know you cannot avoid the germs there. A young teen home alone without her friends is also very hard too.(My dd) We took her out of school last winter so as to limit the amount of viruses she got in a row. In other words, she went to school through the fall and was absent during the winter months and returned back after spring break. We felt this helped reduce the number of exposures and was a fair compromise for all. I know it helped her heal. She was normally sick all through winter in the past years. It was not easy but, I knew her immune system still was overactive at the time and I knew she needed a break. She got sick in October last fall, looked like a flu, and it set her back some, so that help us decide to pull her for winter. Our approach will be the same this winter, if she gets ill this fall and has a set back we will again pull her for winter because, she normally catches at least one virus per month Jan thru March and we will not take further chances of immune stress and overactivation. However, if this fall she doesn't relpse we will then take it day by day throughtout the winter. I made this compromise with my dd, husband, school and doctors becuz I too had the gut mother instinct that this was dangerous and although she had ivig she still relapsed hard after viruses. WE actually sat with school last August and discussed plan with teachers and principal. They understood our plan and agreed to help as much as possible. WE are doing the same plan this year if needed. So I understand this paralyzing fear, its a real fear, and Extremely legitimate and scary. After all we have been through, all of us pandas parents truly understand this fear.

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My brain has lost the capacity to respond fully, the way I used to to this disorder- blown fuses, no more stress response due to the years of stress and anxiety over this.

 

Me too! I seem to respond well to improvement (so, I guess emotions still working!), but I'm like somebody who has grown up in a war zone- just step over the dead bodies and continue on my way. We always get through it somehow!

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Im talking on grounds of my personal experience.Lyme disease can affect multiple body systems and produce a range of symptoms.It is diagnosed clinically based on symptoms, objective physical findings (such as erythema migrans, facial palsy, or arthritis), a history of possible exposure to infected ticks, as well as serological blood tests. :)

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