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First time here... in need of help


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Hi my name is Sara....

 

I am the mother of a 7 yr old boy named Gage who was diagnosed with PANDAS last Feb 17th, 2010. That had to be one of the worst days I have ever had. I am not looking for the magic pill, for I know it doesn't exsist. I am just here looking for some other helpful advice or suggestions from fellow PANDAS parents who I know have gone and are going through the same things as we speak. We are all in the same situations... maybe we can help each other make it through together. I myself have been dealing with a PANDAS eepisode now since the start of school in AUGUST of this year. Gage has been on Keflex for three months now and he is not getting any better. He is allergic to Penicillin so that knocks out a lot of antibiotics they like to use. He gets SEVERE onsets that include the not so typical visual and sensory HALLUCINATIONS along with it. He has seen everything from snakes to feeling things crawling in his clothes. He has severe ANXIETY(including seperation), OCD, ODD, rage and anger flares, bouts of confusion, ADHD, crying spells, night terrors, diminished handwriting and comprehension during episodes, and the list goes on and on and on.... he won't sleep by homself, he can't be in a room by himself, he won't go to the bathroom by himself, he has to carry his blanket to school everyday just to go to school when he is not sick and can go... he has missed his allowed days of school for the WHOLE YR ALREADY and he has only been in school for 3 months?!?! I go to the Dr atleast every week or every other with him. We are definately there every other week though. I go days without sleep staying up with him... because everytime I hear him I wake up and then I can't sleep... is anyone else having this same problem? I just want to know what other ppl are doing. My prayers to you all! Gage's mom!

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Welcome to the latitudes family! Have you considered trying Zithromax or Omnicef? You also want to rule out strep in all family members even if they do not have symptoms.Could anything else be interfering like allergies or any other possible co-infection?

 

Not sure if you have stumbled on these links, but they are very useful...

 

PANDAS Fact Sheet

http://www.latitudes.org/forums/index.php?showtopic=6265

 

PANDAS FAQ

http://www.latitudes.org/forums/index.php?showtopic=6266

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Welcome! I came here just two months ago looking for help. I am by no means the expert here. My son is 6 and has been on biaxin for two months now and he's made amazing improvements. Two months ago, he had motor and vocal tics, lots of ocd's, separation anxiety, fears, rages, many aspergerish like behaviors, In fact, a neuropsychologist who evaluated him a few weeks before I found this site told us our son was Asperger's and mood disordered. That kicked me into high gear because I was suspecting PANDAS but our son has never had a throat swab for strep when he's been sick and his titers for strep and mycoplasma are normal.

 

Today, he has a very slight throat clearning tic. The rages, fears and many of the ocd's are gone. The ocd's left are not impacting his life. He does still get into our bed every night during the night and he has some separation anxiety still but not to the degree it was.

 

I recommend you consider changing antibiotics, dosage and/or consult w/ one of the PANDAS experts. We sought the consult of one of the PANDAS experts, frankly because I could get no local doctor to even consider my son has PANDAS, let alone treat him.

 

Cindy

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Glad to have you on the forum. My son is 13. When he was 7 he was very much like your son. He got no sleep and neither did I. NO amount of antibiotics helped him. We did not know then what we know now. It took us a long time to figure out that, in his case, he was harboring bacteria in his tonsils. Once we figured that out and got his tonsils out we had much improvement for several years, until he had a rare sinus infection this year.

 

I think it is important to know what the source of the infection is. Some kids have strep, some mycoplasma, some lyme, some staph or other infections. Once a child has PANDAS, ANY infection can trigger a reaction -(not just strep)... Even allergies and viruses can trigger a reaction, and they do not respond to antibiotics.

 

Are you working with a PANDAS specialist? They are really good at ordering the correct blood work to find out what your child's immune system is like and what infections he may be battling. Chances are there is more than one infection going on. They can also consider a steroid burst and IVIG if it is appropriate (I am not recommending you jump into IVIG - I am just saying it is an option out there).

 

Best wishes to you as you navigate through this..

Edited by kimballot
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Hi Gage's Mom,

 

Welcome...your son sounds so much like my daughter, your life so much like mine. We are all in the same stormy sea and this forum is our lifesaver..it buoys us when the seas are rough, educates us when the storms abate and anchors us in support throughout.

 

What to do (I wish we knew the best options for everyone but each child responds differently to so many "treatments"):

 

Overall: A PANDAS specialist is your best option.

 

For sleep: Valerian Root helped us a little with sleep.

 

To help reduce inflammation: ibuprofen was helpful for my dd

 

Antibiotics are invaluable for us.

 

Keeping a written log was so helpful to me (a burden at times, but a fabulous tool).

 

We did opt for IVIg and that has also proven extremely beneficial.

 

No words can truly express what a PANDAS family experiences...and few words are empathic enough to express my sorrow for your family...but this forum will help you through the stormy seas.

Mary

from Michigan

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My heart goes out to you. We had the hallucinations (snakes) as well. Get to a PANDAS specialist ASAP. My husband is a physician and we tried to treat on our own (Lord knows we got no help from any other medical professional) and finally had our phone consult with Dr. K this morning. The best money we ever spent, he is amazing and we all (including my son) feel better about the future. Prayers are with you, get some help, it will not always be like this.

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My heart goes out to you too.

I will pray for your son and your family tonight. One of the best thing I ever did for my son was finding this place and getting help from other pandas parents. It really changed course of our family's lives.

My son is 17 yrs old and has had pandas for 9 yrs. Needless to say that my family have gone through a living ###### past 9yrs but I never gave up believing that there is a cure/treatment for my son. I could only imagine how scare and helpless you must feel but I want you to know that you are not alone.

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My son was diagnosed as having PANDAS July 2009. This is now 18months into treatment and he takes Keflex 1000mg dails (500 x 2) every time he has a flare up and is on 250mg daily erithromycin for prophylaxis. I am not sure that the prophylactic treatment works though as he keeps getting breakthroughs although never as bad as the first onset. My son's most troublesome symptoms are the tics but he also gets tummy pains, rash, anxiety and night fears when he has a flare up. His gait changes also and he walks very stiffly with his foot turning in slightly and his body slighly tilted. Usually when he gets a flare up after 1 week of full dose Keflex things are mostly gone (always low lying tics since this started though) but this time he has taken Keflex for 9 days and tics are still there. I hope we all have a day when we look at our children and this is all over but I am not sure how many children truly do grow out of this. My doctor said most will be relatively tic free after puberty but from reading on here I am not sure that this is true. On a positive note however, my son was top of the year academically this year and is being awarded a prize for his academic achievements so maybe all the supplements, healthy diet etc is working on aiding with focus and concentration.

Good luck to all.

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Welcome!

 

Where do you live? I agree with the recommendation re. contacting a PANDAS specialist. I also vote for Azithromycin (full-strength)....give it at least a month.

 

Also, check out these podcasts, lots of great info! http://www.latitudes.org/forums/index.php?showtopic=3928&pid=75348&start=&st=#entry75348

 

Also, are there silbings? I would rec. checking all family members for strep.

Edited by EAMom
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