New Here, Just Learned About PANDAS today, feeling hopeful!

[monicap0417]

Hello all! I am brand new here. I just happened to stumble across an article about PANDAS today while searching online for disorders related to aspergers. I have an 8 year old son who has been diagnosed with ADHD and OCD and anxiety, he is currently taking Vivanse for the ADHD (which has made a huge difference) and just recently started taking Lexapro for his anxiety. However he continues to have other symptoms and issues which we knew weren't related to his ADHD, OCD or anxiety but we haven't been able to get a correct diagnosis for him. I am now convinced that he is suffering from PANDAS. He started having these "tics" or "episodes" as we called them about 2 years ago, it started with a constant clearing of his throat (and when I say constant I mean constant, all the time), he is always chewing on the cuff of his shirt, and most recently he has started having these full body tics, they almost look like a shiver. His school work has been going downhill, he can't focus and needs to have directions repeated to him many times (for awhile his teacher thought he had a hearing problem but he doesn't). He's also got a sensitivity to certain sounds (especially his twin sister, she can't sing or hum or whistle around him at all, drives him nuts) and he refuses to wear certain clothes (won't wear jeans at all, made me get ride of them). And one of the biggest issues we have with him is he doesn't sleep. We are lucky if he finally falls asleep at 1:00 am, and then has to be woken up about 6 hours later for school. I could go on and on but these are the main symptoms we are dealing with. We don't remember him ever being diagnosed with strep but he had a history of croup and ear infections for a very long time. So my question to all of you, where do we begin in trying to get him diagnosed? We live in Minnesota and I haven't been able to find a doctor in this area that specializes in PANDAS. We are more than willing to travel to get him to a doctor that can diagnose him and treat him. Any advice would be greatly appreciated. So thrilled to hopefully have an answer for our son!!!!!

[Chemar]

Hi and welcome

I am bumping up your new post so others can respond

[3bmom]

Below is my post today for teenager with PANDAS. Thought it may help you too so I copied it. There is a lot of great info on this website. It may be overwhelming but you can learn from those who have paved the way. Welcome and hugs for being an awesome mom!

My DS is 15. We have been on this journey since he was 6. We didn't have a knowledgeable Dr till 11 when we had the anorexia-like component rear its ugly head and lost 30 lbs in 2 months. He wouldn't eat because he didn't want to grow taller. Wacky.

Some PANDAS kids have poor reactions to SSRI's. Our Dr has a very strict protocol that has to be followed first and since it brought our son back to stable we follow his directions.

First a Dairy free, grain free (except one serving for a sandwich), GMO free diet. Basically the Paleo Cave man diet to eliminate inflammation in the brain. We were not allergic to nuts except peanut sensitivities.

After diet we did Anti-virals, check post on Valcylcovir and then Antibiotics

We then introduced Sertraline and fortunately didn't have any issues. Our Dr. does a Neuro-spect brain scan of the frontal lobes. Here he finds most of the kids have areas of low blood flow shown like dark pools in the brain. He says the SSRI will keep seratonin in the frontal lobes to promote healing. He can show this on follow up scans but more important on behavior.

He does blood work every 6 weeks and it will show if you are not following the diet which after many years he feels is the foundation to healing.

Our DS lost his ability to read, write and calculate math. At the time of his flare he had D's and F's. We are now back up to A's and B's.

I can only speak of our experience. It is truly an individual journey but here you will have help and support for the twists and turns. That being said I would ask your Dr to try Valcyclovir before respirdol. My concern would be the side effects of resperidol.

On a different note females need to have a thorough GYN exam. Cysts on the ovaries, (maybe elsewhere..I have boys) can have the same psychiatric symptoms. GMO food promotes these cysts even in very young girls.

What an amazing sister you are! Please keep us posted.

[pr40]

lack of sleep makes everything worse. our dd takes 1.5mg of melatonin which helps her fall asleep. you may want to experiment with other serotonin pathway medication like 5htp.

in addition to looking for a PANDAs dr, you may want to start him on a diet, gluten and casein free might be helpful. fish oil, too. ibuprofen.

Dr K is in Chicago.

[Mayzoo]

Here is a PANDAS provider list, state by state: http://pandasnetwork.org/resources/providers/provider-list/#MINNESOTA. I hope you find one close enough that you can get to, and even better, on your insurance.

 

My kiddo had strep when I took her in to get blood work to explore PANDAS. I was not even aware she had it. No fever, no sore throat, no symptoms at all. Then it took 60 days of antibiotics to clear the strep that I have no idea how long she had. Additionally, ASO and Anti-Dnase blood work is a start, but it is not definitive. My kiddo was tested in the midst of this 60 days of infection, and her titers were never up. She is immune compromised, so she does not respond as she should to almost any infection. Your child may have had strep and you both were unaware of it.

 

ALSO.........

 

Research on this site about PANS. These symptoms do not have to be strep associated, but they be related to other infections. Look at some of the signatures on this site and see all the variations of bacterial, tick-borne and viral infections that have been found in our kiddos after we all began "turning over the rocks." My siggie shows how complicated my kiddo is, and many others have more complicated cases than us.

 

Good luck and I hope you him the help he needs fairly painlessly.

[Missmom]

Looking back now in retrospect the very first tic my son had was a throat clearing tic. It lasted a couple of weeks I thought it was sinus drainage or something. He was about 8 years old at the time as well. About a year later had a eye blinking tic, I remember he was sick at that time and took abx. I think that resolved it and I never really gave it a second thought. He was always a little OCD about hand washing and also went through a period of wearing only long sleeves. Even during a hot humid summer (we live in south Mississippi), I referred to it as the summer of long sleeves. It was just a little quwarky but never interfered with his life so we just let him be. He was always very intelligent and never had problems in school as a matter of fact, he always tried to be perfect and good as to not disappoint. He has also had sleep issues and worries about everything. He has trouble falling asleep.

 

He had a lot of strep and sinus infections during this time but I was always very diligent about getting him to a doctor and always treated him right away with abx. His big episode hit when he was 11 years old in 6th grade. He woke up one day and could not stop nodding his head. He had not been feeling well and I took him in immediately. The pediatrician did not think it looked like strep but I had read an article about pandas I knew all of his symptoms fit. I begged the pedi to test him. He thought I was crazy but agreed. I had him do two rapid tests and both turned up negative. I then begged him to run the bloodwork. He really thought I was crazy but ran the labs just to shut me up. What do you know, he called me a few days later to say strep was positive. HA..... I was right. He agreed with pandas diagnosis but had never treated it before. He started my son on a month of abx and got him a referral to a neurologist that has been treating my son ever since.

 

When talking to the doctors you really have to be persistant. I mean what does it hurt to run some labwork, or try some antibiotics.

My son is now almost 14 and we are not out of the woods yet. He takes augmentin daily as a preventative. He also takes a vistaril at night to relieve anxiety and help him sleep. It is just a basic antihistamine about like Benadryl. We have not tried any SSRI yet and I am hesitant to do so. My son is a lot better, but still has flairs and had a lot of anxiety/worry/OCD... But all in all he is a good kid. He has A and B's. In school and has a group of friends and plays sports. His tics are mild unless he gets sick or exposed.

 

He also gets very mad when his sister sings or hums as well. He does not like music and says songs get stuck in his head at night and it keeps him from sleeping. We dont get to listen to much music. Sleepig is a big issue for him, he won't spend the night with friends and I am sure they wonder why. He also gets mad when he is not in bed by ten o clock so he can't do things like school dances or church functions like lock-ins or late movies. I am hoping this will get better as he gets older.

 

 

Our pediatric neurologist says that many of the children she treats with this outgrow pandas after puberty. She explained the strengthening of the blood brain barrier and gives us hope that at least some of the issues will get better soon. My son is almost 14 and although he has started to show signs of puberty, he is not there yet. I am probably one of the few parents saying "bring it on".

 

Anyway, I noticed a lot of similarities in your story so I wanted to share ours with you. Please try to find a doctor who will go easy on the SSRI meds and rely more on a trial of antibiotics. Sometimes steroids can help as well, but again we have not tried them because they sometimes can exasperbate tics. Ugh.... Keep us posted and stay positive. You are on the right track.

[qannie47]

While I love Dr. K., you might want to think about Dr. T. Dr. T runs a lot more tests, looking for the needle in the haystack. Judging from your description, you may need some extensive testing done to find a connection/root cause. A lot has been learned about the etiology of Pandas/Pans in the last 2 years. The criteria is expanding, and more root causes are being understood when it comes to neuro psyche symptoms and the autoimmune system. There are a number of test that doctors can now run to give you and your doctor information to go on.

 

Best of luck

[blakes_mom]

Monica, Just to let you know we never did find a treating pandas doctor when we lived in Minnesota. We ended up traveling to see Dr Roger Kobayashi in Omaha, NE and have been very pleased. My sons symptoms sound very similiar to what you are seeing, especially the sleeve chewing thing.

[Brese]

I have a child with PANDAS and a child with general anxiety disorder mild OCD and sensory sensitivity. Your child sound very similar to my daughter with anxiety disorder. She got very angry at noises, humming, TV, sound of bags especially the more stressed she was. She had difficulty sleeping because of the anxiety and she also experienced the full body shiver thing. I thought it look like a seizure sometimes. She had intrusive thoughts and racing thoughts and sometimes could not keep track of anything. I thought she had ADHD. She refused to wear certain things and did not like us touching her. The psychiatrist said it appeared as though she had ADHD but it was her anxiety and she also had a sensory disorder. They went through a few medications before finding the right one. The put her on prozac that finally worked.

 

Intrusive thoughts gone, no shivering, sleeping, not snapping at everyone for noises and demanding everyone is quite while she talks. Decreased anxiety, able to touch dirty dishes, touch people, have people touch her.

 

She had CBT to help with sensory disorder and OCD and most all symptoms are gone unless she has abnormally high levels of stress. but she has tools to help her get through the really tough times.

[jferinga]

When my daughter was diagnosed I was surprised at all the various symptoms we saw and also other parents reported, confirmed PANDAS dx.

 

I came across research about mycoplasma. A doctor in California conducted research in mycoplasma, chronic fatigue, and autism. Very interesting since I am a special education teacher. The researcher identified chronic infections in a group of children diagnosed with autism. I emailed him looking for a referral/reading for my daughter since she had pneumonia, step, and multiple ear infections before onset. Her diagnosed illness typically come from strep out mycoplasma,; She was positive with IGA & IGM for mycoplasma so I kept researching this.

 

The California doctor referred me to a doctor in New Jersey, Dr. Bransfield, who wrote an article in autism. In the article he mentions kids with autism who were positive for various bacteria/viral infections. He also lists, and cites research, bacteria/virus that are associated with autism along with a over 30 bacteria/virus known to cause neuropsychiatric symptoms.

 

Message me I can send the research.