First Post-Newbie

[Indiana Rose]

I am new to this forum and to the "Land of PANDAS". My 13 year old son was diagnosed with OCD last January. Previously he had been diagnosed with ADHD and PDD-NOS at age 3 1/2. Over the years the school system labeled him with ASD/Aspberger's. I wonder now if it wasn't OCD/PANDAS all along- he always had a thing about order, sameness and having to complete things. He was doing relatively well with no meds and minor accomodations being made for him at school. Anyway, my son started having issues that were different for him almost two years ago. To me, it just looked like he was in a fog with mental slowing. I thought it could be due to puberty changes and stress from transitioning to the Middle School. Later, he also had a regression in writing skills and Math. He is the one who finally shared with me that he thought he had OCD and that he had mental rituals for nearly everything. He had a bout with strep throat just prior to this but I didn't put the two together until after his recent diagnosis. He had a strep antibody test done less than a month ago at my request and it was @ 683 (normal being 0-200). The doctor prescribed a 3 week course of antibiotic but I have yet to fill it. I have worked so hard in the past to heal his leaky gut issues. He was GFCF for 4 years. He also had multiple food allergies which had to be removed from his diet as well. All this just to ask... I have some monolaurin that a doctor had ordered for him many years ago (not supposed to go bad) and I was wondering if this would be a suitable option rather than the prescription antibiotics? It has been almost 2 years since my son's last known Strep infection-the NIMH website recommends to use antibiotics only in the case of active infection. Is there anyone out there who uses natural supplements that don't destroy the beneficial bacteria in their fight against PANDAS? Does anyone know of a health care practitioner in Indiana who is up on the treatment of PANDAS? Anyone who has used Dr. Kovacevic in Chicago? I wonder if my son doesn't just need to be chelated. It had been suggested 10 years ago that he should be, as he tested positive for metals. We just never got that far. Arrrggghhhh! What to do, what to do...

[peglem]

Welcome! Many people have seen Dr. Kovacevic and he is one of docs who is well versed in PANDAS treatment. He is not a DAN doctor though, and is unlikely to treat with all natural supplements. He gets good results though, for PANDAS.

 

I don't know anything about monolauren, but if your son has PANDAS, I think you should hit it hard and use the abx.

[EAMom]

Antibiotics are key for PANDAS kids. In fact many of the kids on this forum are on long term (and full-strength, not just lower prophylactic doses) antibiotics.

 

You can also add on probiotics.

 

Here is a good thread (FAQ) for you to read. There is a section on antibiotics in the middle of it. http://www.latitudes.org/forums/index.php?showtopic=6266

 

I would say at age 13 and the severity of his symptom set, it would be important to treat this aggressively.

 

Here is a flowchart you might find helpful. http://www.latitudes.org/forums/index.php?showtopic=3928&pid=53002&start=&st=#entry53002

[thereishope]

Welcome. I can only imagine that it is a hard decision to make for antibiotics. One hand you see the leaky gut issues, the other hand you see the antibioics. The thing is if he has a hidden infection, he needs those antibiotics. We are also talking about more than an infection, but also a possible assault on his brain. Perhaps once things calm down you can go a more natural way, but you also have to look back at his life and see the struggles he has already faced then look at that antibiotic prescription you have sitting there and think to yourself "What if that script can help my son". Baby his gut in all other ways. Probiotics, lots of them, like EAMom said. Space them out from the antibiotics too so they are more effective. Your son is also 13, make him part of the decision. I think he'll tell you he wants to give the antibiotics a try.

 

Being that you are in IN and rather close to Dr K, just do the drive and see him.

 

Finally, here is a website your son may want to visit. It was created by a 13 year old boy with PANDAS. It's a good place that your son can talk to others.

http://www.pandas-syndrome.webs.com/

[cobbiemommy]

Make the call TODAY to Dr. K in Chicago. My son was diagnosed in February, 2008 with Pandas. The DAN doctor used only supplements, restrictive diet and allergy shots and kept telling me that Ryan would get better in 2-4 years, but that I had to have total compliance on diet, etc. We tried for over two years, spent thousands of dollars, and still he never got better-other than his eczema healed. We flew to New York to see an autism specialist, who also diagnosed Pandas and put us on antifungals for many months. Finally, when he put us on antibiotics, my son got better. That being said, when the antibiotic were discontinued, he got worse again.

 

Finally, I found this group, and learned about Dr. K. He literally saved my sons life. My DS had suicidal thoughts, thoughts of harming others and was extremely defiant, along with verbal tics, ADHD, separation anxiety, physical tics and inflexible thinking. After HD IVIg, my sons suicidal thoughts and thoughts of harming himself are gone. We still have a long way to go for total healing, but we are making progress.

 

TAKE THE ANTIBIOTICS! Give him a good probiotics, but take the antibiotics and don't stop taking them as long as he needs them. Because of your sons age, talk to Dr. K or one of the other docs about HD IVIg.

 

I know I sound militant, but I would never wish the pain we have been through on any other child or parent. Best of luck to you.

Cobbie

[peglem]

Have you been to Dr. K's website, webpediactrics.com? He discusses autism and PANDAS, and I think you'll find you are right about it really being OCD/PANDAS all along.

[PhillyPA]

I have this reoccurring dream. I am scratching through the air like a maniac. I am trying to turn back time. I am floating through the hole I created and swimming through the universe. I have arrived to 2007. I see my two sons. One has tested positive for Group A strep and has an antibiotic. The other older son is also sick but he tested negative so he did not get an antibiotic. I am wearing white. I am handing my son a little cup of augmentin. "There you go. This will save you." I am so happy...and then I wake up. I am sweating. My heart is beating a mile a minute. It was just a dream. I didn't save him. My nightmare is real.

 

The son who didn't get the antibiotic was five years old at the time. He lost most of his speech. He became completely autistic. My happy, bright 5 year old who wanted to invent the flying car or become a doctor like his daddy was no more. He was autistic with a twist. He was aware of it. He would cry and say, "I want to talk". He would say, "I have a terrible sickness." It got worse and worse and worse. He is 8 now. He started treatment after having the disease for 2 1/2 years. The disease can morph. It can get much worse.

 

Please, give him the little cup of antibiotics.

[Indiana Rose]

You guys are awesome and I am sitting here thanking God for you... I am heading to town NOW to pick up the antibiotics. I will contact Dr. K in Chicago as well. By the way, the ATB that my son's pediatrition ordered for him is a Cephalosporin called Omnicef- She had her reasons for ordering it, I don't remember why, but I haven't seen this one mentioned on the forum. Should I request a differenrt one?

[Megs_Mom]

I have this reoccurring dream. I am scratching through the air like a maniac. I am trying to turn back time. I am floating through the hole I created and swimming through the universe. I have arrived to 2007. I see my two sons. One has tested positive for Group A strep and has an antibiotic. The other older son is also sick but he tested negative so he did not get an antibiotic. I am wearing white. I am handing my son a little cup of augmentin. "There you go. This will save you." I am so happy...and then I wake up. I am sweating. My heart is beating a mile a minute. It was just a dream. I didn't save him. My nightmare is real.

 

The son who didn't get the antibiotic was five years old at the time. He lost most of his speech. He became completely autistic. My happy, bright 5 year old who wanted to invent the flying car or become a doctor like his daddy was no more. He was autistic with a twist. He was aware of it. He would cry and say, "I want to talk". He would say, "I have a terrible sickness." It got worse and worse and worse. He is 8 now. He started treatment after having the disease for 2 1/2 years. The disease can morph. It can get much worse.

 

Please, give him the little cup of antibiotics.

 

Philly - You made me cry! I think all the time about what if I had refused to accept the diagnosis of "not pandas" when her strep titers were low. I think I could have given her a year of joy back. It's hard to look back sometimes. Hope your son is doing better now.

 

Indiana Rose - maybe find a good DAN doc that will work with you - start with saying if the abx cures his mind, then how do we ensure that his gut will stay health as well. A really ggood DAN! doc will understand that you have to make choices and his job is to help you keep the rest of the body healthy. Good luck - we all so hope to hear good news from you. YYou will like Dr. k - he is very kind.

[cobbiemommy]

Have you been to Dr. K's website, webpediactrics.com? He discusses autism and PANDAS, and I think you'll find you are right about it really being OCD/PANDAS all along.

Do you think Dr. K believes that most Aspergers or Autism is really PANDAs? I did hear him on Autism One Radio saying that the brain does not get sick, but that the body gets sick and affects the brain. Sorry to hijack the thread, but he never would commit one way or the other when I tried to pin him down. I think that much of my DS Asperger's is really PANDAs.

[Iowadawn]

Get to a PANDAS doc. Your son is getting older by the day. You would be able to get into to see Dr. K in fairly quick order--At least that has always been our case. The supplemental support will help best if you take care of the main issue. Dr. K seems to be open to supplements, so I don't think he will pooh-pooh that approach, but he won't say that's going to take care of your son. FLORASTOR is a fantastic probiotic--often recommended in the autism community for gut health and has been suggested to us by Dr. K. You can google it read about it. You can email him--go to his webpediatrics.com website and you will see how to contact him. Please, don't waste another day trying to go at this alone. Get your son on the abx. Welcome to the forum. Dawn

[peglem]

Have you been to Dr. K's website, webpediactrics.com? He discusses autism and PANDAS, and I think you'll find you are right about it really being OCD/PANDAS all along.

Do you think Dr. K believes that most Aspergers or Autism is really PANDAs? I did hear him on Autism One Radio saying that the brain does not get sick, but that the body gets sick and affects the brain. Sorry to hijack the thread, but he never would commit one way or the other when I tried to pin him down. I think that much of my DS Asperger's is really PANDAs.

I think he believes that PANDAS is one possible cause of ASD, but not the only cause. I think he believes, like me, that what is called autism is only a collection of symptoms and you should search for the underlying medical problem- often immune related, but not always.

[Indiana Rose]

Make the call TODAY to Dr. K in Chicago. My son was diagnosed in February, 2008 with Pandas. The DAN doctor used only supplements, restrictive diet and allergy shots and kept telling me that Ryan would get better in 2-4 years, but that I had to have total compliance on diet, etc. We tried for over two years, spent thousands of dollars, and still he never got better-other than his eczema healed. We flew to New York to see an autism specialist, who also diagnosed Pandas and put us on antifungals for many months. Finally, when he put us on antibiotics, my son got better. That being said, when the antibiotic were discontinued, he got worse again.

 

Finally, I found this group, and learned about Dr. K. He literally saved my sons life. My DS had suicidal thoughts, thoughts of harming others and was extremely defiant, along with verbal tics, ADHD, separation anxiety, physical tics and inflexible thinking. After HD IVIg, my sons suicidal thoughts and thoughts of harming himself are gone. We still have a long way to go for total healing, but we are making progress.

 

TAKE THE ANTIBIOTICS! Give him a good probiotics, but take the antibiotics and don't stop taking them as long as he needs them. Because of your sons age, talk to Dr. K or one of the other docs about HD IVIg.

 

I know I sound militant, but I would never wish the pain we have been through on any other child or parent. Best of luck to you.

Cobbie

[Indiana Rose]

Cobbiemommy,

You said to keep my son on antibiotics as long as he needs them-how will I know? I have a feeling that my son was exposed/had strep again last Fall as I had taken him in to his pediatrition because he was complaining of a sore throat-he tested negative for strep so didn't receive antibiotics. I ended up pulling him out of school in February to home school him things got so bad. I have a sister in her forties who STILL gets strep throat! Another issue that we have been struggling with lately is the constant soiling of my son's underwear. We're not talking a minor laundry inconvenience here-it smells ungodly! I treat his undershorts and pants with prewash and wash them, sometimes twice, and there is still a smell. (sorry if TMI, I am a nurse so am used to such conversation). Last night out of frustration I was knocking on the bathroom door (while he is preparing for his second shower of the day) begging my 13 year old man/child to let me in so I could SHOW him how to clean his bum (his dad refused). I have asked him if it is a fear of contamination issue (which he denies), but he refuses to use a washcloth. As near as I can get out of him, he isn't really cleaning himself back there at all. I have tried explaining to him that if he gets himself clean after bm, he shouldn't have to worry about "ruining a washcloth". Today I bought flushable wipes (which he refused before because "they're wet"). I have disposable gloves-should I offer them to him??? I have told him that if he doesn't let me know what is going on so we can fix this problem (he is ruining furniture and I don't want kids at school making fun of him), he will have to discuss it with and be examined by the doctor. Any suggestions? He says he isn't sore or raw, I don't know how he can't be. I read in an older post that sometimes strep can colonize the anal area-wouldn't he have discomfort?

[Worried_Dad]

Hi, Indiana Rose (I was born in Fort Wayne myself):

 

I'd be cautious about the disposable gloves, because that could quickly escalate into a full-blown compulsion. It did for our son (now 14). During has last exacerbation, he couldn't touch anything with his bare hands - not even allow them to brush against his shirt or pants - due to OCD contamination fears. In desperation, we offered him latex gloves. He become totally reliant on these, and we were going through more than a box a day (50 pairs) at one point, buying them in bulk.

 

It's so awful when you just want to help your child... but some of the help turns out to empower the PANDAS OCD instead of the child. Wish I had more useful advice!

 

 

Cobbiemommy,

You said to keep my son on antibiotics as long as he needs them-how will I know? I have a feeling that my son was exposed/had strep again last Fall as I had taken him in to his pediatrition because he was complaining of a sore throat-he tested negative for strep so didn't receive antibiotics. I ended up pulling him out of school in February to home school him things got so bad. I have a sister in her forties who STILL gets strep throat! Another issue that we have been struggling with lately is the constant soiling of my son's underwear. We're not talking a minor laundry inconvenience here-it smells ungodly! I treat his undershorts and pants with prewash and wash them, sometimes twice, and there is still a smell. (sorry if TMI, I am a nurse so am used to such conversation). Last night out of frustration I was knocking on the bathroom door (while he is preparing for his second shower of the day) begging my 13 year old man/child to let me in so I could SHOW him how to clean his bum (his dad refused). I have asked him if it is a fear of contamination issue (which he denies), but he refuses to use a washcloth. As near as I can get out of him, he isn't really cleaning himself back there at all. I have tried explaining to him that if he gets himself clean after bm, he shouldn't have to worry about "ruining a washcloth". Today I bought flushable wipes (which he refused before because "they're wet"). I have disposable gloves-should I offer them to him??? I have told him that if he doesn't let me know what is going on so we can fix this problem (he is ruining furniture and I don't want kids at school making fun of him), he will have to discuss it with and be examined by the doctor. Any suggestions? He says he isn't sore or raw, I don't know how he can't be. I read in an older post that sometimes strep can colonize the anal area-wouldn't he have discomfort?