3boysmom

Dr L asked us to treat our dog because it has been found that dogs can pass strep even though vets don't agree with that. She said it is cheaper to go ahead and treat without testing because testing is expensive because the dog needs to be put under. Our vet treated with antibiotics, but then called Dr L and she said she'd rather him give our dog a shot of Bicilin. (spelling?) and so he did.

Is he in therapy? It may help for him to talk about those feelings. Just a thought..... Hugs to you (& him as well).

I wonder if you can buy supplements in Canada and then try the equivelent for antibiotics. I know many on here go that route, like olive leaf extract or something like that. You can post a new topic and others that use this approach can chime in. Then can you get those supplements on-line? I obviously know very little about this approach!

I'm not sure how things are yet. The 9 & 10 year olds were dx early and are doing well (I always hate to say that out loud) they are on antibiotics only. The 12 year old was on a great recovery until 2 montbs ago. Dr. B thinks it is still the coinfection of mycoplasma that seems to be stubbern and we are trying Cipro starting tonight. Many of us wish we would have figured this out years ago, & wish we "got to this place" sooner, but remember this place didn't exsist years ago. Even the PANDAS doctors are pretty new to all of this. So here we are, all figuring this out together. We will get there because we are not quitters. Sorry about spelling... I am aweful on this iPhone! Linda

Sometimes my husband says to me "not everything is PANDAS". Somethings are regular puberty issues . Remember, your son is 14. I think if there was a cure or pill or whatever for teenage attitudes, everyone would be in line to buy it. Don't forget to praise him when he is making good choices. You sure are a fighter for your son....perfect forum name!

This was posted on here last year and I think Josh's mom is either on this forum or the Pepsi one. I think he ended up getting the IVIG and you can probably search old posts here and read more.

Just getting home, missed the show. Did any of the children present as PANDAS?

In a hurry to catch a conecting flight, but I needed to let you 2 new friends know that PANDAS has what we all call "saw tooth" healing in that the progresee goes up and down. Like already noted 2 steps forward and 1 back but still equals progress.... Although slow. Hang in there and keep a journal because you think you will remember all these changes, but it gets hard to remember dates. It will help you see progress over longer times ! Linda

Wow! Welcome and so sorry! You will be at home here with some amazing families that share similar stories. I would write more, but we are at the airport flying back to Texas after another IVIG with Dr. B. 3 PANDAS sons, but 2 caught early and are holding so far with antibiotics alone....knock on wood. The older son was sent down the wrong diagnosis and path for many years, so recovery is more difficult and complicated, so we keep fighting the fight. Good luck, Linda Glad you found Dr B and had an appointment. Hope he has a plan for you all!

Thank you Mayzoo, but you posted about last week's show. This comercial looked like TS or ? I think it will be hard to watch as the children's issues look somewhat familure from the short comercial snippet. Might end up being another group of people to reach out to!! So much sadness PowPow- ji just came back on to edit that I checked out the link that you posted and that is the episode that I was looking for. It did say TS! Thank you both for helping. Maybe we will get home from IVIG trip on time to see it .....maybe it will be too emotional and raw right now..... Linda.

Just saw the comercial again and the show is actually called "My Extreme Affliction"

Just saw a comercial for "My Strange Affliction"- new show on Saturday night. A show about people living with strange illnesses and such. The comercial just showed children with body movements and uncontrolable vocal noises. They did not say what was wrong and we will be flying home from CT and I will miss it. Does anyone know what this is that they will feature tomorrow? It was disturbing to see the comercial with the parent crying... I am curious what this is! Linda

If you search past topics, I know that there was a topic about a month ago with helpful posts on fighting for insurance approval. Best wishes, Linda

Your ds may have/ had strep that you were unaware of even after T & A removal. Strep can hide in other areas as in the sinuses. Also, adnoids grow back. Our middle son never had a soar throat or fever but when we had him swabbed for strep as per the PANDAS doctor (to make sure strep was away from the PANDAS son) he tested positive with no illness signs at all! Dr. L had us test all 3 boys....now all are treated for PANDAS. Titers for that middle child were 1920! Dr. B said the strep was in his sinuses and after 1 month of steroids, mucinex, and antibiotics-(will stay on antibiotics) the sinus problem he lived with daily for years, was finally gone. If the strep issues were a long time ago, the titers may no longer be high. Best of luck and prayers.

Bump

Today at our IVIG #5 with Dr B. He went over labs for our ds12. He is currently on augmentin XR 2000 x2 (4000 a day) along with minocyclin for myco. He has been on zithro., biixon, & minocycline to treat the myco-P. His numbers have not gone down, so Dr. B thinks this is why the IVIG's are not really showing improvement like the first few did. Can myco be that much of a " bugger" to cause that big of issues? Dr. B changed ds from minocycline to Cipro. Who has experience with this one and did it help with your childs myco-p or OCD? Thanks for your help, Linda

Yes we will be there mon & tues....not my buisness......but please check your dates (by calling or emailing the office) because I heard Steve tell the nurse (Louise) that he was almost sure that Rich said mon & tues and Not tues & wed ...... Blessings! Linda

Makes me want to scream out support for Dr. T! So frustrating that the NYTimes put their own moronic spin on this!

It was nice seeing you,. Ian is a real cutie! I hope I wasn't a downer. I got upset when I took a peek into our ds's red folder and saw his labs. We too will be back in 8 weeks. Steve thought you all would be there on May 7 & 8, but I think Louise said you all are the 8 & 9. I may be wrong, but either way, maybe we will see you again. Did Ian try Hunter's trick for taking out the needle? Also, the middle son's AntiDnase finally moved from 1920 to 674...so, that was good news that I was anxious about seeing! Hang in there and we will compare notes soon ( hopfully we will both see improvment). Prayers, Linda PM me if your husband wants to email mine... It seemed theraputic for Steve to connect to another dad that understood. Don't beat yourself up about the vaccines, even the white paper doesn't give dirrection on that issue.

We just landed in New York and picked up our ugly lime green rental car. All 3 boys have an appointment with Dr. B but only the DS12 gets IVIGs. Tomorrow will be #5 and I too am not sure what we will try next. He did very well after the first 2 but no improvement after # 3 and then after # 4 we are back to OCD and tics. We will see you tomorrow. (my husband is the one that was talking with yours at the last visit) Linda

Just bought April's Parents Magazine with the PANDAS article in it. When we began this journey and Googled PANDAS....we only got the black and white bears. Finally!

When all 3 boys got sick in Dec of 09, we had no clue it was strep. Small uneventful fever...then head tics began with one son, HSP with the middle son and non stop handwashing with the oldest son. Didn't know that it was all related to strep,

Would like to know this as well. Our son has been on augmentin xr1000 x 2 for 2 years now, however his strep titers have gone back up for the first time in 2 years! How?

How can we parents help? We have so much information to offer. If the researchers had a data bank of our families with a list of specific controlled questions to ask, wouldn't that help? We even sent our genetic testing and (it had an interesting "marker"!) to Dr. Geller last year, answered 3 hours of questions and gave blood from us all. What do they need.....Our family would be willing to help...