I have my son back

[momcap]

Ds(7) cultured positive for strep last week. He started a 10 day course of amoxicillin Tuesday night. By Thursday I could see a difference in his face. His expression was calmer and happier. He was starting to relax. Last night he informed me that the medicine is really making him feel better because he doesn't feel like making a big fuss about anything. And he didn't make a big fuss over anything at all. Normally my day consists of surviving from one "big fuss" to the next, trying my best to stay one step ahead of him, predicting what might cause a meltdown and trying to avoid it. In the last 2 days he has been enjoying some of the things he used to like. He is loving music! Before he would scream at me to turn it off, now he is singing, dancing, and drumming along. This summer he refused to go outside. Yesterday we walked for 2 hours in the bush and I listened to him enjoying everything with the wonder of seeing something new. "Mom this is the most beautiful place. I can really understand nature and God's creation when I'm here." Today he said, "Mom, I know this medicine is for my strep throat, but I think it's doing more than killing the strep. I feel better and I'm making good choices." (We talk about choices a lot in our house.) The most obvious difference is his severe tactile avoidance has simply disappeared overnight. He put a dress shirt on for church this morning, stating that he looks handsome in nice clothes. ???!!!! This is a child who would rather have a full-out war than put on a dress shirt. Last week he was determined to wear his worn-out shark pjs to church because they were the only thing that didn't bother him, and we ended up missing church altogether after having a 30 min clothes battle and realizing we started too late. He sleeps through the night on abx. The daily pain complaints disappear. We saw the same dramatic change in August on penicillin, and again in September on penicillin.

 

I know when the antibiotics end he is going straight back to the "alphabet soup" (ADHD, ODD, GAD, SM, MD-NOS, etc). The doctor won't prescribe anything more unless he has an active infection. How can I stand by and allow this to happen to my child??! What more can I do to keep him away from this monster of PANDAS? How do I convince the doctor to believe me and do something? I want to scream!!!!!! Somehow it almost hurts more, seeing that my little boy is still in there.

 

Sorry - just needed to get that all out. I can see that I am going in circles, getting nowhere and will inevitably end up bringing ds to one of the doctors mentioned on this forum. Thank you all for your support!

[thereishope]

It's an odd feeling. You are overjoyed to have your child back, but with an underlying hidden fear that you will lose him again and the thoughts of that causes such anxiety. Amongst the things you can do is to make sure no one else in the house has strep. This is to help avoid reinfection and exposure (which in itself can cause problems in a PANDAS child). Also, do simple things like change his toothbrush. No matter what, call the doctor before the script ends and ask...no beg...for an extension. You mention you went for walk in the bush...where do you live? I cannot remember your son's history, but by reading what's above, he was on antibiotics in August and sept. Are those for 2 diiferent strep infections? If they are, I bet it was one strep infection that didn't clear.

 

I wish you the best that his recovery continues.

Edited October 3, 2010 by Vickie

[Joan Pandas Mom]

Changing your toothbrush is a good idea. Change your toothpaste too. I buy the little travel ones and so they are thrown out pretty quickly. Your son CANNOT go off antibiotics. You need to see one of the PANDAS docs here that know what they are doing ASAP. My son was treated with a 10 day course of abx when this nightmare started. He got a little better for a very short time then it started in again. We were not sure it was PANDAS then, not enough was known, this was 6 years ago, so the initial prescription took enough of the horrible PANDAS symptoms away that we were left with what looked like ocd. That became his diagnosis from then on, ocd. You have to keep him on abx at least a year for recovery.

[Suzan]

Can you see one of the PANDAS docs to possibly get a longer term antibiotic prescription? Would you feel comfortable ordering abx from Canada on your own?

 

HUGS and I am glad you have some meds and can see your son get better, it's a confirmation you are on the right path but just need the support!!!

 

Susan

[kimballot]

I know how you feel... I rode that roller coaster for many years with my son. I agree with Vickie- if he was on antibotics for 10 days a month for the last 2 months, then he may not have cleared the infection. I also agree that a PANDAS specialist would be very good if you are able to get to one. You may also want to make an ENT appointment for your child. ENTS often prescribe prophylaxis ABX for children with recurring infection.

 

I hope your son continues to doe well -

Edited October 4, 2010 by kimballot

[EAMom]

You are in Canada right?

 

I would go with the rec. to see a PANDAS doc. Even if you have to pay out of pocket to see Dr. Latimer...well that's what most of the Americans do anyway with the good PANDAS docs.

 

Would your ped okay long term abs if that is Dr. L's recommendation (she's a well regarded pediatric neurologist, not just a "PANDAS doc")?

[momcap]

I think we are quickly exhausting all options except to head into the U.S. to a PANDAS specialist. How many of you have posted that you should have just run to a PANDAS doc in the first place? I can't fill U.S. prescriptions without a Canadian doctor co-signing. I really really hope that either our pediatrician or GP will be willing to do this. So far no luck with either one on requesting longer term, heavier hitting abx, but maybe they will listen to a well-respected doctor rather than a panicking Mom. Just need those cunninghams back first, so I know I'm not way off base.

 

Thanks again for the support!

[Johnsmom]

I havent posted much here of late but thank god I read yours. You have taken the words right out of my mouth "big fuss"

 

That is exactly what goes on in my house.

 

I feel your pain when you say you want to scream. How unfair it is to all of our kids. My 9 yr old is now just asking questions about PANDAS. He told me almost 2 weeks ago that it felt as though his mind was being taken over.

His abx has been increased and he is doing better.

 

Get to one of the docs as soon as you can.

 

Childhood should never feel this way.

 

johnsmom

[EAMom]

PANDAS/long term abs are really out of the average ped's comfort zone. Our ped initially didn't want to rx long term antibiotics. But, once we had a consult with a rheumatologist (and later a neurologist) who agreed that long term abs was appropriate, she was "off the hook" (b/c a "higher authority" had given their okay) so to speak, and didn't argue any more about writing us rx's. I think a lot of peds don't want to "get in trouble" for over rx'ing abs, and they are also trained to be somewhat fearful of "overuse" of antibiotics.

[momcap]

I jinxed it. He woke up this morning clutching and pintching at his side, screaming in pain. Then told me he didn't feel real and everything was different. He's seeing "pictures flashing in [his] brain." He's on day 7 of amoxicillin and he's 102 degrees, his throat hurts, and his stomach hurts. What on earth happened? What is going on inside his body? Headed to the E.R. shortly...

[peglem]

I jinxed it. He woke up this morning clutching and pintching at his side, screaming in pain. Then told me he didn't feel real and everything was different. He's seeing "pictures flashing in [his] brain." He's on day 7 of amoxicillin and he's 102 degrees, his throat hurts, and his stomach hurts. What on earth happened? What is going on inside his body? Headed to the E.R. shortly...

Very sorry to hear this. Praying for you guys! Maybe this will help get some things figured out!

[laure]

I jinxed it. He woke up this morning clutching and pintching at his side, screaming in pain. Then told me he didn't feel real and everything was different. He's seeing "pictures flashing in [his] brain." He's on day 7 of amoxicillin and he's 102 degrees, his throat hurts, and his stomach hurts. What on earth happened? What is going on inside his body? Headed to the E.R. shortly...

Very sorry to hear this. Praying for you guys! Maybe this will help get some things figured out!

[thereishope]

Oh no. By the time I read this, you're probably already at the ER. I hope everything went okay and you were able to get a different antibiotic. I'll be looking for an update from you later. Prayers being sent your way.

[momcap]

I convinced the E.R. doc to give us a script for Zithro. Only 5 days, but I'll take it. Now to figure out how to get it into a puking child, who is now 104 degrees. And I FINALLY made the jump and contacted a PANDAS doc - Dr. T. Had a good chat today about next steps, and we're doing an official phone consult in a few weeks. I'm applying for passports tonight. I should have done this in the first place! Thanks to those of you who PM'd me!!! You guys must have been praying hard because we had a miracle today. While we were at the E.R. one of the docs agreed to take on our family as patients!!!! No more driving 2 hours each way to see a GP, who doesn't even want to prescribe antibiotics. Yay! I don't know if this new doc will be PANDAS-friendly, but we have nothing to lose. Thanks everyone for your comments, prayers, and concern. Hoping for better days ahead!

[EAMom]

Yes! It will be wonderful if the new doc will follow Dr. T.'s advice, and shows some interest in PANDAS as well.

 

can you try some advil or tylenol for the fever?

Edited October 6, 2010 by EAMom