tapiash

My son has red cheeks too on prednisone. He also gets very hot and sweats alot. The doctor told me it was pretty typical, not to worry

Robin, 151 falls within the PANDAS range for CamII. I'd say that with your son's score and clinical symptoms of PANDAS, together you have about as good of an answer as you can get which is yes. However, Dr. K told me that he doesn't rely too heavily on the CAMKII score. For him, I believe, it is the combination of the history, clinical symptoms, and then the response to the steroid burst. If you get a positive response to the steroid burst then that seals the deal for Dr. K, as I understand it. Certainly though, if I was in your shoes, I would pursue PANDAS full speed ahead at this point. Good luck, Alex What exactly should I look for with steroid. My son didn't talk much in exacerbation. Now hat he is on the steroid he is hyper and asks a million questions. This would be positive, right? OCD is better and his emotional outbursts are not as violent.

Hi there. I had suspected my 9 year old son had been suffering from PANDAS for about 2 years. I live in LA and fought hard with my pediatrition just get the blood test . Finally he agreed and my sons #'s were very high. Long story short this DR was not treating to my satisfaction and admitted that he was not qualified. This site helped me find Dr. Lin in Irvine who has really come through for us. He is great to talk to and perscribed azythromicin, diflucan, probiotics and Omega 3. my son is a different kid. I would say that anxiety and OCD is 85% GONE after 15 days. I am keeping my fingers crossed. This site is priceless. I didnt realize how many kids (& parents) were going through the same crap. Dr Lin is my sons doctor too. We live in NM and we drove to Cali to see him. He is pretty amazing. Is your son hyper on the steroid and does he overheat? Dr. Lin didn't prescribe Omega 3 but we are in the process of getting IVIG in two weeks. Tell me more about the Omega 3

You all are AMAZING!!!!!! Thank You!!!!

Hi Danny gets solimedrol(sp) a steroid and 25mg benadryl prior to the IV He has had 4 at home.I also have a script for prednisone 30 mg in case a headache occurs.The 1st 2 IVs he had a headache and I gave him the prednisone He was also using a different IVIG .TYhe nurse slowed the infusion on the 3rd and he did much better headache wise.The last IV (friday) was great switched to gamunex and 4 1/2 hrs infusion .no headache . Yes I know my immunologist uses steroids during and after IVs Melanie ps hows your child doing post IV How many prednisone pills did you give him before and after

We are probably one of the negative posts you are talking about. He is almost 5 weeks out. Our problem was we just could not keep him well after IVIG. The stomach bug and a sinus infection hit him hard right after it. It didn't even get a chance to work. We seem to be having some improvment the last couple of days, not perfect, but going in the right direction. Not sure if it is the IVIG kicking in or the new antibiotic. Even with our slow progress, I would do it again if insurance approved it. We are still fighting that fight. He will also be having a T&A soon. I feel like I have to do everything I can to get my son back. All of this is so hard and scary. I am constantly second guessing myself. I just know that with our situation, we had to do it, it was bad enough to feel like we really didn't have a choice. I am so sorry to hear about your son but I am glad you are starting to see some improvements. If you are like me, anything positive is a step in the right direction. For us the insurance approval was a breeze. I did absolutely nothing to get approved. Our pediatrician handled it all. It was nice. I almost feel guilty feeling the way I do because so many on this forum have been denied approval. We will go through with it, but I am just nervous and scared. PANDAS has taken a toll on our entire family. I pray we are on our way to recovery. I hope your family is on its way to recovery also.

Sorry to hear you were denied. Keep fighting. So many emotions we deal with on a daliy basis. It is tough. I am not positive but I think it was auto immune deficiency and encephalitis. My doctor also wrote a letter to the insurance company stating it was medically necessary. Coram health also pulled strings. We are having the procedure done in NM and our doctor is in Ca. Where do you live?

My sons IVIG was approved. I thought I would be overwhelming with joy but I m not. I am scared and second guessing my decision. I have read so any negative posts about IVIG. My son is currently on steroids and extremely hyper. He also overheats in 80 degree weather. I am thinking I would rather pursue IVIG than keep him on steroids. Maybe I am just nervous about the procedure in general. It is a scary process. those who have had Ivig, please chime in. Did any of you feel the same way?

The local newspaper in in my hometown wants to interview me about Pandas and my son. As far as I'm aware there is noone in NM diagnosed with PANDAS. I have written several post but no response. This is a great opportunity to educate others. I am so scared because I do not know how to prepare and I do not want to mess up any information.

I read not having enough fluids/water in your system causes the side effects. Its almost like dehydration. How is your son doing now? I think we are having IVIG mid July. Did your insurance cover?

Our dd just received IVIG from Dr. K. last week. Her dose was 1.5 g/kg. 2 g/kg means that your child will get 2 grams of IVIG for every kg that your child weighs. For example, if your child weighs 100 lbs, that equals 100/2.2 kg or 45 kg. Your child would get 45 X 2 or 90 grams of IVIG. As I said, the dose of IVIG that our dd received was 1.5 g/kg, half one day and half the second day. I believe this is Dr. K's regular dose and 2 g/kg is a high dose. One thing to note. Make sure your child is well hydrated before, during and after. Dr. K. pushes several hundred ml of IV fluids before and after the IVIG. This, and making sure your child drinks a lot of fluids prior to and after each day of IVIG will reduce the severity of headaches. Thanks for the great information. How do I find out whether or not my insurance group approves it. I found an infusion center that takes Cigna for auto immune disorder, I wonder if this means we are covered. Well, call them and ask! I did call and they said yes, but it seems way to easy and too good to be true. Just asking a question Im not ignorant. Im so used to arguing and justifying why I need treatment for my son.Nothing has come so easy.

Wes see Dr. Lin. Have I told you this before? We drove 19 hrs to see him. One of the great things with Dr. Lin is our insurance reimburses us and even if we didnt get reimbursed, he amazing and we would see him anyway.

Wes see Dr. Lin. Have I told you this before? We drove 19 hrs to see him. One of the great things with Dr. Lin is our insurance reimburses us and even if we didnt get reimbursed, he amazing and we would see him anyway.

Our dd just received IVIG from Dr. K. last week. Her dose was 1.5 g/kg. 2 g/kg means that your child will get 2 grams of IVIG for every kg that your child weighs. For example, if your child weighs 100 lbs, that equals 100/2.2 kg or 45 kg. Your child would get 45 X 2 or 90 grams of IVIG. As I said, the dose of IVIG that our dd received was 1.5 g/kg, half one day and half the second day. I believe this is Dr. K's regular dose and 2 g/kg is a high dose. One thing to note. Make sure your child is well hydrated before, during and after. Dr. K. pushes several hundred ml of IV fluids before and after the IVIG. This, and making sure your child drinks a lot of fluids prior to and after each day of IVIG will reduce the severity of headaches. Thanks for the great information. How do I find out whether or not my insurance group approves it. I found an infusion center that takes Cigna for auto immune disorder, I wonder if this means we are covered.

Something I noticed from the Sammy story on Mystery Diagnosis (I've never read the book) is that, though they stated that the psych meds did nothing, he got worse when on them and even worse when they kept raising them. Before we knew my daughter had PANDAS, we tried a LOT of psych meds- they either made things worse or made no difference.I think if you're dealing w/ residual anxiety or OCD after you have PANDAS in remission, therapy can help to banish those- but if you're still seeing wildly out of control stuff, you're probably not in remission. Oh, nice analogy! One more point I'd like to make- If your child had cancer, you'd most certainly see an oncologist who has extensive experience in treating cancer. I'm not comparing cancer to PANDAS, just saying you may need somebody who specializes in treatment of PANDAS because its not something that most doctors really know what to do about. My son was on psych meds for 9 days. I honestly thought I was going to lose him. I took him off the meds without asking the doctor. Honestly I new he was getting worse and I figured if I kept him on he would die. His OCD and contamination fears were out of this world. He took every piece of clothing item, bedspread and stuffed what he could in the washer . The washer would not even turn. It was smoking. He probably would have ended up like Sammy had I kept him on the meds. I feel for Beth and admire her courage and her strength to fight for her son. I am in the mental health field so I know first hand the reactions these meds have on children. I was desperate and that is why I tried them.

I dont care if the test is still inconclusive. We are parents with feelings, and might I add parents who have been put through ###### and back (excuse my language)The least thing the doctor could do is be or show more compassion and find a better choice of word. to describe meaningless.

I received a prescription from my doctor for IVIG. More confused than ever? What is 2 gram/1kg? Is this what Dr. K recommends?

My child had 8 bloody noses yesterday. Is this a side effect of the steroid? What are your recommendations? I cannot get a hold of my doctor. We have tried a humidifier but it is not working.

I don't want to talk, because the last time that I said he was better, he became worse the following day. But if you asked , we are on our 20th day of abs and he is doing better, his motor tics went from tics every 20 seconds to 1 tic every couple of hours. The vocal tics we heard them now only at the end of the day before going to sleep. I'm afraid of being happy, I'm afraid of falling again to this nightmare, I'm afraid that this is the waning and waxing thing that people with tics have. I hope that I'm afraid in vane and that everything will be fine! Isnt this such a horrible illness. I too am afraid. The waxing and waning eats me up, breaks my heart. I watched Mystery Diagnosis and sobbed the entire segment. Many of the same symptoms and treatment, not as extreme. We took my son of OCD and Tourettes medication 9 days after he began them. It was obvious they were not working and I honestly did not care what the doctor recommended. My son was deteriorating before my eyes.

I wanted to give an update on my son. He seems to be responding to antibiotics and steroid treatment. He is more verbal and we are having less melt downs. He spent the weekend with my mom and she said he was talking non stop. This is someone who told us there was nothing wrong with him. He is smiling and giggling again. He is a little more flexible and less aggressive. Praise God, I think we are getting somewhere. I still want to pursue IVIG because he still has his moments but they occur less frequent. It seems like treatment is working. Can this be too good to be true? Has anyone else had similar gains?

Michelle I totally agree with you.

yes, I did a post on this topic not too long ago!!! Absolutely, chlorine is a big tic trigger!!!! We finally switched to a salt water chlorinator for our above ground pool....it cost around $180.00 at walmart.....best investment ever!!! My son swims every day now and has had no reactions to it!!! Last year....he had a small vocal tic every day from swimming in the chlorine pool we had......It seemed like it took about 3-5 days after swimming for the tic to start disipating!!! We just encourage the swim days at our home with his friends vs. a public pool. Good luck!!! My son has been swimming for the past couple of days. He keeps asking me if he has mosquito bites on his back. He cannot stop scratching. I wonder if this is a tick or a reaction to the chlorine and sun , or his medication and the sun. I don't remember him ever being itchy after swimming.

Oh I see. makes sense.

Encephalopathy but he didn't say anything about it during our visit.

I am so glad I have a knowledgeable doctor. Things have been so crazy in my life. The last thing we need is a doctor who cant help us. I think things are finally starting to get better for my family. I pray it continues.