a little of my story SFmom and i need help PLEASE!

[Fixit]

Hello to all,

 

I have been reading on this for several years as my son had an eye blink starting around 2 1/2-3. I’m concerned I let a doc give a vaccine a couple of days after a high fever. I did tell the doc about the high temp. I wonder if that lowered his immune system, then allowing him to get strep at the drop of a hat???? Also blinked with alleregy season.. I don’t have allergies so I treated for a cold. Could have been strep from day care. I also wonder since I still have never had strep or knew anything about it, did I let the first time or 2 he had strep go on too long before getting antibiotics?. Sometimes I hate myself.. But now I knew to check for strep as soon as he got sick and if he ticked. (would clear rite up)

 

Then he had a bad bought w/ step for about 3 weeks over Christmas when he was 5? First meds weren’t working I could tell. Doc added another week and still no better. but by the 10-14 day his joints ached so badly we couldn’t even touch him. We went to the ER and they said it was from the penicillin. But I now I know it could have been from the strep, rheumatic fever. Can we test him now to see if its penicillin? It’s a good drug to have in your arsenal if you need, but we haven’t because of this episode. This is when the shoulder shrug replaced the blink and I got scared… Doctors say no correlation but tell that to the parents who can pin point to the day. That’s when I found Pandas

 

I don’t face some of the challenges you are facing!? My son’s tics go used to go away after 3-4 weeks after the we started the antibiotics And the last couple of years it’s about (8+9) maybe this would happen 2 times a year for about 4 weeks... Didn’t necessarily test positive to strep but it was at the peek of allergy mid-Marchish each time. Eyes looked like they were punched, throat sore and swollen and even when the docs look at it were surprised it didn’t test positive for strep He would get strep at least 3-4 times a year. But this doc worked with me to still put him antibiotics incase it was some other bacteria. The role was gone in 2-3 weeks But I started to wonder if other things could trigger this. I didn’t know about pitands then. Through holidays till now, we have had many vomiting sessions and diarrhea run through the house and not 1 tic. I have a 2, 6, and (the 9 year who exhibits tics). So now we’ve had nothing for 5 months. I’m thinking we’ve passed it. He’s system is good and we’re done. PS tests high allergic to all pollen, grass, weeds, cats some to mites and dogs. Both dogs died a year ago…do you think that help reduce his bodies constant battle, you tell me?

 

But on 4/5/09 we drove to Disney. The baby kept hitting his ear, so I figured I’d get a doctor as soon as we got there, to not ruin the whole trip. My oldest the 9er says “ mom my neck hurts and there’s a lump and my throat hurts”. So I had the doc check him also. Did short test, neg. Glands were swollen, nasal passages swollen. Could be nasal drip? He does have Terrible spring seasonal allergies!

Woke up 4/6/09 go to Disney and he starts jumping and kicking his feet to his behind. 700xs or more during the day and I’m not kidding. I know what that is!!! Heaven help me!!! My heart is going to literally break!!! My sweet boy!! Being the mom I’m the only one who sees it! It’s not excitement!! It’s too much for that! He would have stopped by now!(ps crankiest ever..but when you don’t feel good you’re cranky)

I was able to convince the visiting doc to put him on an antibiotic 4/7 as I’m crying on the phone. I make appoint for ped visit as soon as we get home and neuro 5/21/09.. Rest of the week was horrible. 4/9 we’re walking and I ask if he is alright and his eyes started to well up, and he said “mom it’s my stupid legs….they just won’t stop”. He was just tired having to constantly jump. He just wanted to stay in. He can be a coach potato too.. Vacation for him can be doing nothing. My husband and I gave him piggy backs some and offered to get him a wheel chair but he’s a trooper and just wanted to get going.

 

Fast forward..Now his tics are morphing every day and here are some notes

On 10/5 in car though I saw him make face…a smirk, flare nostrils and eye roll. Did it next day only in car 10/06/06 Wednesday and tried to hold face to make stop, long ride back from allergist 10/7 notice at kitchen table 10/8 noticed it milder and seemed more like a reaction …finger snapping and an occasional jump now and then. .10/9/09 good in morning…bad after school…got in trouble today at school… snippy with us…. Face smirk, with nostril flare really bad a lot of ticking….i feel sick….

10/10/09 a ton of tics today smirk w/nose flare/snaps/flaps(maybe to end snaps)jumps (I think he tries to hold his face so it won’t move….i think I noticed this before)my heart is breaking

10/11/09 woke up a lot of jumps / a serious eye frow/move, eye roll, turning away I think he’s getting very aware because its a lot. Puts head down with eyes closed for several seconds playing football outside…says it feel like there is something in his eye. That stops…go to football practice…of course we are still jumping…..a serious eye frow with nostril flare. Now notice he can’t talk when doing that one and takes a second to regroup. Coaches at football gave him a lot of attention(in a good constructive way) so maybe that felt like it was only adding to discomfort…I notice he’s a little meloncoly today, not talkatitve… I think he realizes why we are on this gfcf diet even he test neg food to allergies, I THINK HE THINKS I AM GOING TO FIND THE ANSWER so he puts up with all we are doing, but he’s getting very defiante this week, without out telling me in words, I KNOW this is NOW finally gotten to him.

 

I'm sorry i've look but i'm an idiot ,please give me the address and number for the cunningham test, someone....i found the phone number for the doctor in DC and i am calling tomorrow

 

also in sammy's story -how long was he on anti', what kind/dose and some said about slow release??? is that an optional treatment as opposed to pex/ivig

[peglem]

Madeleine W. Cunningham, Ph.D.

George Lynn Cross Research Professor

Microbiology and Immunology

Director, Immunology Training Program

University of Oklahoma Health Sciences Center

Biomedical Research Center Room 217

975 NE 10th Street

Oklahoma City, OK 73104

Tel 405-271-3128

Lab 405-271-2133 X47455

FAX 405-271-2177

email: madeleine-cunningham@ouhsc.edu

I emailed her and she arranged to send me the kit for the blood draw.

[thereishope]

So, you can compare some of what what my son has experienced compared to yours...

 

My son had a big setback in in his behaviors when he had seasonal allergies this year. I took him for a strep test, convinced it would back +. It didn't. A week or so later his eyes were bloodshot. I couldn't see any white. That was his only sign of allergies this year. I started giving him Claritin and it helped at first but then made him very hyper. I switched to Benadryl and as soon as the red in his eyes subsided, his behaviors stabilized too.

[sf_mom]

I would definitely consult with Dr. Kovacevic or Letimer. Its obvious that antibiotics are no longer doing the trick...... With the Cunningham's results Dr. Kovacevic and Letimer will be able to make a better judgement on his condition and the most appropriate treatment. Kathy from Cunningham's office is sending me a kit out today for follow up on my son and understand they will not be testing Thanksgiving through January 3rd so don't hesitate to contact them immediately.

[ShaesMom]

Don't be so hard on yourself. You will find the answers to help your son.

 

I just wanted to add on the GFDF diet and food allergies--if your son was tested for food allergies with skin testing and Rast and they all came back negative it may mean that he still has allergies only they are not IGE mediated. It is very possible to have food allergies that only show up in the GI and not on the skin or in the blood. My dd was scoped three weeks ago and they found Eosinophilic cells in her esophagus, tummy & colon. Eosinophili's are allergy cells that are typically NOT IgE mediated so it is unlikely that allergies will be found through the traditional methods. She will probably have to go on an elimination diet and then be rescoped to see if the allergens have been removed.

 

Also, celiac's often does show up in the blood tests either. An endoscope is the most accurate way to dx it.

 

My dd7 was born with an anaphylactic allergy to dairy so I've had several conversations with her allergist & GI about additional allergies and how the GI tract allergies are a little different than the allergies that show up on the skin testing. We are going in today for a full allergy panel and blood work before we start the elimination diet.

[Fixit]

No,i couldn't get a doc to continue anti's, sorry for the missunderstanding

he was only on anti's 7-10days in april, no docs in Ga subscribe to pandas

my pediatircian said "yah, that's not widely accepted"

with new footage from sammy and some other stuff maybe i can persuade someone down here

 

ps on april 6, 2009 highest pollen count of year 3500...prior highest days were 1600ish

his body fights but just can't take it after a while

had aso antiB? tested in may doc said it was normal...what's normal? not being sarcastic. i don't know if he gave me the number

but from what i read per buster these could look normal and stilll have strep, right?

 

Been trying food GFCF, highvitamins, aminos, exercises

[colleenrn]

What antibiotic was your son last on, what dose, and for how long? He could have strep now without the physical symptoms. Sounds suspicious for strep back in April.

 

Colleen

[KeithandElizabeth]

We all understand the stress and panicked feeling you are having.

 

Where do you live?

 

Between Dr. K and Dr. Latimer, as well as several immunologists who are treating PANDAS, I am sure you can get some help soon. An immunologist may also be able to help with the allergies.

 

I would try to get the antibiotics if you can... I had a hard time getting them as well. You can also use Motrin to decrease some of the inflammation.

 

Keep us posted and we are all thinking of you.

 

Elizabeth

[Fixit]

cephalexin 250/5ml susp 100ml ...14 days

too low?? not long enough this was the worst i've seen him

 

he's at least 75lb, eats like a man and plays like a 9 year old boy

 

and what about the doc saying aso was ok..in may? is that becasue of the cephelx in april and/or can titers not necessarliy reflect right?

[greeneyes48072]

Some the kids continue to see an elimination of symptoms after antibiotics, so that would be a good step, shop around for a doc that will give him some now. I would also call Dr. K for a phone consult. We did our stuff in person, so I don't know how much he will do by phone, but he takes care of our prescriptions for us too, even though we are in a different state. If you are still trying to confirm PANDAS, another good thing to try is a steroid burst. If it is PANDAS you will normally see a reduction of symptoms on the burst, which would be nice to give your son a break, but keep in mind it is only a temporary reduction. Ours only lasted a week after the burst ended. We hit a lot of walls with doctors, but had to shop around ourselves. I found a local peds that believes this is what he has, so before we finally met w/ Dr. K, the local peds allowed us to try anything we found out about online...you just have to find the right dr.

[Fixit]

We all understand the stress and panicked feeling you are having.

 

Where do you live?

 

Between Dr. K and Dr. Latimer, as well as several immunologists who are treating PANDAS, I am sure you can get some help soon. An immunologist may also be able to help with the allergies.

 

I would try to get the antibiotics if you can... I had a hard time getting them as well. You can also use Motrin to decrease some of the inflammation.

 

Keep us posted and we are all thinking of you.

 

Elizabeth

 

thank you...

I live in alpharetta ga... i can't find an immunologist either..not one listed on ped's list and if i found one they may have said i need a referral..i hesitate to call my "not widely accepted ped

 

can i give mortin everyday and for how long can i continue

 

Called for cunningham test no response yet...maybe they are off today.

 

called dr L this moring have an appoint november 20...receptionist seemed a liitlte put off...i asked her about why a little put offish...she was nice don't get me wrong but sort of implied maybe Dr L a little overPandas/or its taking too much of her time from other neuro stuff ie seizures

[Fixit]

cephalexin 250/5ml susp 100ml ...14 days

too low?? not long enough this was the worst i've seen him

 

he's at least 75lb, eats like a man and plays like a 9 year old boy

 

and what about the doc saying aso was ok..in may? is that becasue of the cephelx in april and/or can titers not necessarliy reflect right?

 

started biotics on 4/7/09 for 14 days could tell wasn't getting better...is it right that they are not making anti's stong enough

 

felt things weren't reacting the same tried to get docs to extend bx's ....no go

 

did blood draw on 4/22/09 exactly 14 days after start

could that be why aso came in at 71 and it says DNA(DS)anti <1 in range.....did they do the wrong test on that one

am i correct that that these may not be meaningful

COULD it be some other bacteria??

[Fixit]

THANK YOU SO MUCH!

[sf_mom]

Anti-DNase-B rise 8 weeks after infection..... if at all. My son's were negative.

 

cephalexin 250/5ml susp 100ml ...14 days

too low?? not long enough this was the worst i've seen him

 

he's at least 75lb, eats like a man and plays like a 9 year old boy

 

and what about the doc saying aso was ok..in may? is that becasue of the cephelx in april and/or can titers not necessarliy reflect right?

 

started biotics on 4/7/09 for 14 days could tell wasn't getting better...is it right that they are not making anti's stong enough

 

felt things weren't reacting the same tried to get docs to extend bx's ....no go

 

did blood draw on 4/22/09 exactly 14 days after start

could that be why aso came in at 71 and it says DNA(DS)anti <1 in range.....did they do the wrong test on that one

am i correct that that these may not be meaningful

COULD it be some other bacteria??

[peglem]

We all understand the stress and panicked feeling you are having.

 

Where do you live?

 

Between Dr. K and Dr. Latimer, as well as several immunologists who are treating PANDAS, I am sure you can get some help soon. An immunologist may also be able to help with the allergies.

 

I would try to get the antibiotics if you can... I had a hard time getting them as well. You can also use Motrin to decrease some of the inflammation.

 

Keep us posted and we are all thinking of you.

 

Elizabeth

 

thank you...

I live in alpharetta ga... i can't find an immunologist either..not one listed on ped's list and if i found one they may have said i need a referral..i hesitate to call my "not widely accepted ped

 

can i give mortin everyday and for how long can i continue

 

Called for cunningham test no response yet...maybe they are off today.

 

called dr L this moring have an appoint november 20...receptionist seemed a liitlte put off...i asked her about why a little put offish...she was nice don't get me wrong but sort of implied maybe Dr L a little overPandas/or its taking too much of her time from other neuro stuff ie seizures

For some reason, doctors of osteopathy (DOs) seem more willing to think outside the box and investigate health problems. This can help you find one in your area.

http://www.osteopathic.org/index.cfm?PageID=findado_main

 

Also, you might have better luck emailing Dr. Cunningham. Her lab has been VERY good about getting back to me quickly whenever I've emailed.

 

I have found that the best bet in finding a pediatrician who will "think outside the box" is look for a DO-doctor of osteopathy. This may help: