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I would like to hear about the healed. Again if you would.


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Hello everybody,

I would like to introduce myself, and my reason for being here.

 

My name is John . my 4 yr old son is currently in treatment for P.A.N.D.A.S. .

We are fortunate enough to live in Chicago land, and to have found Dr K.. (thanks to the pandasnetwork.org website and Google keywords results).

 

Our story in a nut shell.

Nov 14 2009 may have been the beginning, I noticed high temp(to the touch) while moving him to his bed, but since he did not express any sickness during the day, we gave little thought to it.

Nov 15 was the first tic, "Complex vocal tic" that was a Sunday, one time. That evening i did searches like ' what are the symptoms of tourettes".

During The week by Tuesday 20-30tics a day or more.

 

After sifting through many pieces of information, we found treatment from Dr K. on the 25th of Nov 2009.

 

I have been reading most of what is being put on this board on a daily basis, and this has been very helpful.Thank you.

 

I have read 1 success story member, which gave me a much needed boost in optimism, and i feel there may be others like my self, that could use these stories.

 

The "sawtooth path to healing" explanation was very helpful.

 

Are there any others out there? if so can you point me to the thread, or please post your story here.

 

 

 

 

Thanks again

 

John

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I hope others will chime in with more info., but, I only got a second.

 

What treatment plan did dr.K put your son on???

 

We are on day 22 of Augmentin 250mg twice daily .Current prescription almost finished maybe one or 2 more doses. That is it for now.

 

What next ?

 

I saw immediate improvement within 2 days, and are in the Saw pattern of improvement....good day, good day, not so good day.

 

We are dealing with Complex vocal tics about 1/3 in occurrence, from before treatment.

 

The moods are still rough.

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You are very fortunate to be so close to Dr. K. You are in great hands and got care quickly. Way to go!!!!!!!!!!!!!

 

Briefly, our son's on-set was June 24th, daily antibiotics were started mid August, first IVIG with Dr. K September 19th and 20th, second IVIG November 19th and 20th. Our son is much, much, much better. Our current symptoms are mood liability (cries easily, no raging), a 'flair' of TICs a cough or a series of coughs in one day, he claims to be sticking his finger in his ear a lot because its bothering him (I have not seen this TIC yet), occasional flair of AD/HD type symptoms but don't seem to last ..... Physical symptoms are dark circles, pale skin and chapped lips that are trying to resolve. We believe he most likely had undiagnosed Kawasaki's and TICs developed after each time he had strep, first time only a cough, in June 2009 all kinds of TICs. Probably sick for 1 1/2 years prior to sudden on-set. He is 5 1/2.

 

I am fairly new to the world of PANDAs but I do know my son is doing a lot better thanks to Dr. K. I pray daily for full recovery and know I'll be thrilled when this time next year I can report even further progress.

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Hello and welcome. I know you will find what you need with Dr. K for your son. I would not consider us healed, however we are at a very good place right now. My girls (ages 7 and 8) both have pandas and after trial and error they have much improved on their antibiotic doses. So far the key for us was to find the right dose. I hope to keep them strep free and on antibiotics and hopefully we can make it through until they get older and hopefully manage to work through it all.

 

Susan

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Welcome.

 

 

My son has experienced 3 full fledge PANDAS exacerbations and is doing very well now.

 

John, I have seen a 5 year old wash his hands to the point of blood, convinced his little sister was contaminated, he wanted to go to heaven, he wouldn't eat for days. My son would have rages and meltdowns lasting for 2-3 hours and became agorphobic. Hallucinations of bugs and not being to answer simple questions were his mild symptoms. So much occurred I can't even type it all right now.

 

But, I have him back, John. This Christmas I will have a boy that will want to open gifts and actually be willing to show excitement for them. It won't matter where he is sitting or who is by him. I'm not going to be walking on egg shells, worried the day will be ruined for the other kids. My son now wants to go to school and he asks his sister to play with him!

 

Just know in your heart it will all come full circle and he will recover. It' hard to get there, but you know it's worth it.

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Last year, my daughter was thriving in kindergarten. She tested positive four times on a rapid strep test--the first time was on March 11, and by the third week in April, she had developed into a different child: Obsessive thoughts that were holding her back academically and socially...it really looked like ADD that morphed into Autism. She had excessive guilt, crying fits that morphed into ragey fits, inability to make decisions, bathroom issues, sound sensitivities, a mild coughing tic, and her previous prolific writing and drawing stopped completely.

 

She was treated with Omnicef, Amoxicillian, Augmentin w/Rifampin, and finally Clindamycin...since the clindamycin, all her rapid strep and cultures have been negative.

 

She seemed to really in improve by days 9 & 10 of the Clindamycin, but two days after stopping, she seemed even worse.

 

Dr. Latimer saw her in the beginning of June, put her on a month of prednisone, and 100mg daily azith as a prophlylaxis. The pred was a two week treatment, and a two week taper. With only three days left of the treatment, she snapped out of it, and almost overnight became the funny, talkative, smart and social child that we had before. We continued the taper dose for two more weeks, and by the end, she only two PANDAS issues, that my husband and I noticed (outsiders wouldn't even pick up on them).

 

By the first week in August, she began to write and draw again.

 

In September we changed her prophylaxis from azith to 200mg of pen vk twice daily. Also during that same week, all PANDAS behaviors were gone.

 

October 20th we had her CamK tested it was 112.

 

She had the flu over Halloween, and we didn't see any PANDAS resurface (She took Tamiflu).

 

Nov. 17th she had her first dose of H1N1 vaccine, and again we didn't see any PANDAS resurface.

 

Currently still not seeing any PANDAS behaviors. What I am seeing is a little of what I used to think was her quirkiness returning...getting really picky about her clothes and hair, and being a little rigid about rules, and a very little bit of her attention drifting...but it has never crossed the line.

 

I do think it may have something to do with my slacking off of the fish oil and pro-biotics.---I've gotta get back on the ball!

 

I hope this helps to encourage anyone who is struggling with this right now.

 

~Karen

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Hi John, you are in great hands with Dr. K. I know how scary this all is as I am still fairly early in treatment for my daughter too. I have found a lot of hope in reading what many of the other parents have written on this forum. Many of those recovered do not post often anymore but check back in from time to time to give us still here much needed hope. Have you looked at pandasnetwork.net? Diana has been a great friend to me and has a son who is well after a pretty dramatic onset. You can look up amy s here on the forum or shaesmom...both of those children are recovered as well. It always helps to read the ups and downs others have written about so you know what to expect! I hope your son has a speedy recovery and think you should feel secure in his treatment with dr k.

Kim

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Wow a peaceful Christmas! That's my goal this year. I don't know if it will happen or not we're really riding the fence right now. Things are looking up, but you konw it's hard to let your guard down! All I want for Christmas is my son's life back.

 

Welcome.

 

 

My son has experienced 3 full fledge PANDAS exacerbations and is doing very well now.

 

John, I have seen a 5 year old wash his hands to the point of blood, convinced his little sister was contaminated, he wanted to go to heaven, he wouldn't eat for days. My son would have rages and meltdowns lasting for 2-3 hours and became agorphobic. Hallucinations of bugs and not being to answer simple questions were his mild symptoms. So much occurred I can't even type it all right now.

 

But, I have him back, John. This Christmas I will have a boy that will want to open gifts and actually be willing to show excitement for them. It won't matter where he is sitting or who is by him. I'm not going to be walking on egg shells, worried the day will be ruined for the other kids. My son now wants to go to school and he asks his sister to play with him!

 

Just know in your heart it will all come full circle and he will recover. It' hard to get there, but you know it's worth it.

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Welcome.

 

My son has experienced 3 full fledge PANDAS exacerbations and is doing very well now.

 

John, I have seen a 5 year old wash his hands to the point of blood, convinced his little sister was contaminated, he wanted to go to heaven, he wouldn't eat for days. My son would have rages and meltdowns lasting for 2-3 hours and became agorphobic. Hallucinations of bugs and not being to answer simple questions were his mild symptoms. So much occurred I can't even type it all right now.

 

But, I have him back, John. This Christmas I will have a boy that will want to open gifts and actually be willing to show excitement for them. It won't matter where he is sitting or who is by him. I'm not going to be walking on egg shells, worried the day will be ruined for the other kids. My son now wants to go to school and he asks his sister to play with him!

 

Just know in your heart it will all come full circle and he will recover. It' hard to get there, but you know it's worth it.

 

Vickie, your post really hits home...I keep thinking back to last Christmas when our dd (then 11) was in an exacerbation due to an illness which triggered a Ps episode.

 

She was not speaking ( for 10 days--) because the OCD told her not to--She was step-stepping, entirely unfocused, and this was all while family was here--we did not know what to do. I will always remember her being handed presents and that she would only scratch at them, she would not open them.

Thankfully antibiotics kicked in and she began to heal again--It took many months, full strength antibiotics and two steroid bursts, but she did come back. I am looking forward to Christmas this year--

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I do think it may have something to do with my slacking off of the fish oil and pro-biotics.---I've gotta get back on the ball!

 

 

 

 

 

Has this helped? I'm new at this so I'm still gathering info.

 

Absolutely! Everyone on this forum will tell you to give your child fish oil...it just helps the brain...some parents of TS children find that their's kids tic more with fish oil, and they give borage oil....I think in its place.

 

That evening that I posted this, I made sure to give her some oil, and the next morning getting ready for school was great....she had put on jeans (previously she resfused to wear them), and was ready in great time for school---there was none of the prodding that I have recently had to do.

 

I was very please with a 112 cam k # because it means she is close to being healed, but sometimes I forget she is not fully there.

 

The pro-biotics are very important because she takes antibiotics every day to prevent another strep infection. Yeast overgrowth can also cause some behavior issues.

 

Here are some good treads to go back and read:

 

http://www.latitudes.org/forums/index.php?...amp;hl=fish+oil

 

http://www.latitudes.org/forums/index.php?showtopic=4748

 

Hope this helps!

~Karen

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Hello everybody,

(probably too soon to add anything but...since I am in the middle of at least 9 good days)

 

I would like to say thanks again for all the input here.

 

I have read these replies, and would agree this is a tough battle for us all (for some tougher).

 

At the time of my first post, and start of this thread, my little guy (4) was finishing our doctors prescription.

It has now been 10 days since he has been off the Augmentin and is on no other medicine.

 

I have no answers, and choose these words as if walking on egg shells.

 

Here is what we are doing:

 

We pray

We avoid too much television.

We avoid Foods with ingredients he may be allergic to.

We avoid Foods with ingredients that seem unnatural (no fast food or processed items ,no soft drinks)

We make sure he has plenty of water and rest. (Strangely the word "rest" appears as reset to me)

We avoid anybody that is sick ( i know some of this sounds overboard but, this is my plan for now )

pro-biotics ( blueberry juice from Trader joes) this was not planned but was given the whole time while on the Augmentin , by coincidence. I know some say it is not good and some say it is good.

 

If he is in the middle of a melt down , I hold him and help him.

 

I would like to add vitamins amino acids or fish oils, but do not want to add anything to the list of changes just yet.

I have reduced this to a question of balance, because this is all i have .

 

I am learning from your experiences that tomorrow ,next week , or next month things can change..

 

He still has complex vocal tics, and is easily aggravated, but these things are fading in occurrence.

Things seem to be heading in the right direction.

 

I know we are not finished.

but

I believe the possibility of, this being no more, or manageable.

 

When i have anything else to offer as information, i will post .

 

John

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