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Faith, Your son sounds very similar to our son - he is 11 and very thin - just reached 60 pounds. Slim size jeans tightened all the way are almost too big for him. Our 8 year old started handing clothes down to the 11 year old last year - a sad day for me. He eats like a bird and it drives us crazy. He says he wants to gain weight, hates being small and is easily distracted when it is time to eat. Noisy and restless sleeper that does not sleep much. Has a hard time getting to sleep at night. Doctors have never commented about his tonsils, but we found a large cyst on his adenoids yesterday from an MRI. Doctors can't see the adenoids during an exam because they are behind the tonsils. Our Ped is thinking maybe the cyst is carrying strep and the keflex has not been able to address the strep in the cyst. I am hoping to have the adenoids (and probably tonsils) removed after our discovery yesterday, but I am waiting to see when we can go back to the ENT for further review. Interested to hear what you end up doing on tonsils and if they do a biopsy. We will definitly ask for biopsy of the cyst if we can get them to take it out.

We've been living with PANDAS symptoms for about 6 years now and today our pediatrician found something interesting on an MRI. The purpose of the MRI was to pinpoint the cause of a problem our son (11 years old) is having with his eye, but the MRI did not help us there. Instead, the MRI showed about a 1 centimeter cyst on his adenoid. That sounds huge, but I am pretty sure I heard the ped correctly. She is thinking that maybe step has been hiding out in this cyst. I've read tons on having tonsils and adenoids out for PANDAS kids and wondered if anyone had any comments or if anyone had ever found something similar in their child.

We've done gluten/dairy/sugar free several different times. I would recommend cook books by Carol Fenster - My favorite is 1,000 Gluten-Free Recipes. She does use dairy, but we just use a non-dairy sub. The book gives us lots of ideas and the recipes are like "normal" food. It is a big adjustment, but after a few weeks you will find favorite recipes and you will get into a routine. Good luck!

Iowadawn and SF Mom, Thank you for your comments. I forwarded your responses to our pediatrician to help support my stand that the eye issues have to somehow be related to PANDAS. After I posted last night, I also found more info that would link PANDAS to the eyes issues we are having, at least in my non-medically trained mind. Further to what Iowadawn said about the cranial nerves being involved in eye function, we do have some version of a confirmation of that. We saw a neuro ophthalmologist that did a test to show where the nerve interruption is happening in our son. We know the interruption is happening in section 1 or 2 of the path from the brain to the eye and not path 3. Paths 1 and 2 (which doctors cannot differentiate between) involve the brain and neck area. I know this has to be related to PANDAS and now I just have to find someone that will listen to me!

Our PANDAS son (11 now) was just diagnosed with a condition that results in unequal pupils and an eye lid that droops. These symptoms are caused by some interruption in the nerve flow from the brain to the eye. The name of this is Horner's Syndrome, but this is just the name that they give to the symptoms. The next step is trying to figure out what is causing the unequal pupils and drooping eye lid. This is a very rare condition and I can't believe that one child could have PANDAS and Horner's Syndrome. I am wondering if anyone else has seen unequal pupils in their child - that is what the first symptom was about 4 years ago. We would have a better chance of winning the lottery than one child ending up with both of these rare things. I am wondering if they could be related in any way.

Yes, we have PANDAS like reactions to colds. We would say we can even tell before the cold hits. We see the PANDAS symptoms a few days to a week before the cold symptoms and then it seems to take a week to a few weeks for the PANDAS symptoms to fade away after the cold is gone. Treating PANDAS with 500 mg a day of Keflex has reduced the PANDAS symptoms when colds are approaching.

Dr. Tracie O'Neill, Pediatric Associates in Issaquah, Washington - She is fantastic!

Our son is 10 now, but had leg pain every night when he was 4 and 5 years old. Looking back on things, this was about when I would estimate he had his first PANDAS episode. We didn't know about PANDAS back then and were treating him for systemic candida. His leg pain eventually went away - not sure if it was because the PANDAS episode was running its course. At the same time, he had restless sleep and would wake up every night to use the bathroom.

Wow - your story is like a mirror image of our story in several ways. Our son was an early reader, great at math and did/does everything in a pattern (every lego creation he has ever made is symmetrical). We started with eye blinking, added throat clearing and facial movements. Had bouts of what we thought was EXTREME separation anxiety, frequent urination and OCD behaviors (clothes did not feel good). It all started at about 4 years old and he is 10 now. We felt we were over the hump and "all better" until this past Spring when he got strep and the tics came back very strong. We are recovering from that last round of strep and I feel strongly that we will have him on preventive antibiotics through puberty and who knows how long after that. The chance of another strep infection and another step backward in recovery is not worth the risk. I have seen the antibiotics work and been lucky enough to find another mom just a few miles away that has been through PANDAS with her daughter. The more I read and the more I watch my son with this, I really feel that keeping strep away is a must. It can be hard to come to this conclusion when the symptoms are not very strong, but the steps backward in recovery just get so darn painful.

WOW! This PANDAS site will help so many parents that are still searching for answers, while also helping those of us still on the journey to recovery. It is AMAZING!

I don't know if this would help, but we did some neurotransmitter testing on my son after he kept saying his brain was noisy and it was hard for him to sleep. The test was done using urine and it tested epinephrin, norepinephrin, dopamine, serotonin, glycine, taurine, GABA, Glutamine, Glutamate and a few other things. We found the chemicals in his brain were way out of balance - most notably the excitable neurotransmitters. We did some natural supplements and within a week my son commented that his brain was quiet and he started sleeping MUCH better. We retested about 9 months later and found he was just about normal in all of his levels. Not sure if there would be any connection to the OCD since it seems the OCD might be triggered by inflammation of the basal ganglia, but just thought I would mention it since there was some mention in this topic balancing brain chemicals. The test was done by a company called Neuro Science.

Eye rolling was the first tic symptom that we noticed with our son. At first, we thought he was having a seizure because his eyes would briefly roll up and back into his head. It got to the point where you could just about only see the whites of his eyes. We had an EEG ( I think that is the test) and there was no seizure activity. The eye rolling always got worse towards the end of the day when he was tired and it was always bad when he was watching TV. After some period of time, the eye rolling moved to a different tic movement. Regarding eyes, a year or so after the eye rolling had been replaced by other tic movements, we noticed one of his eyes seemed to be smaller (or open less) than the other. This was accompanied by the fact that his pupils were different sizes. We went to our pediatrician who sent us to to the eye doc. In the end, his vision is fine and there are no issues. At the time, they said a small percent of the population just has pupils that are a different size. Now, I feel it is related to the neurological side of PANDAS because his eyes and pupils are better when the PANDAS symptoms are at a minimum.

Hi Chemar, You mentioned spraying with epsom after swimming. Any idea what the water/salt ratio is when mixing up the solution to spray? Do you know if they rinse off right away or leave the solution on for some time? Thanks to everyone for their comments on this. With no guide book for PANDAS, it helps to hear other people have noticed the same things so I don't feel so crazy!

I have read some old posts that indicate people have seen tics increase after swimming in pools. I am wondering if anyone has had this experience. Over the last few years, we have thought chlorine (or some chemical in the pool) might cause increases in tics, but is seems there are always so many variables. Yesterday, we went to the pool and today was awful with the tics. Oh, felt like a huge step back ... Has anyone else had this experience? Does anyone know why this might happen? Does anyone have insight on how long it might take for the effects to fade away so the tics decrease again? Does anyone have any strategies for preventing this or is the only answer to say no swimming (hard to say to a 10 year old boy)?

I would be interested in hearing about her experience because I have not been able to find much information on what people experience with PANDAS after the teen years. I know everyone is different, but I would like to hear the perspective from someone that has been through this. My son is 10 and it might give him some comfort to hear from someone that is 19 and doing well.

DC Mom - thanks for sharing - how long did you do 400 mg a week

I am wondering if anyone can give me their thoughts on using Keflex vs Zithromax or on dosage strategies. Our pediatrician put our 10 year old son on Keflex. At 500mg a day, we saw improvement in symptoms after 3 or 4 days. After 2 weeks at 500mg, she switched him to 30 days at 250mg. After about 10 days, we started seeing tic movements come back, so I asked to get him back on 500mg. Our new strategy is 500mg a day for 3 months and then evaluate reducing to 250mg. Any thoughts on doses or the 3 month plan? It seems most people are using Zithromax. Has anyone tried Keflex? Any comments on Keflex vs Zithromax? Last thing, we are very worried about candida because of long term antibiotic use. We have been through the candida battle before. Does anyone have any good recommendations on probiotics? Thanks for any help!!!

Hi TMB, With the runny nose and gas problems, might want to look into an allergic reaction to something - maybe food related. Also, gas or digestive issues could be related to candida. Did the tics some on almost overnight, or were they gradual. Has he had any recent strep infections?

Hi EAMom, Good trip to our pediatrician this morning. Turns out she is the only doc in the practice that believes PANDAS is a real medical condition and she is treating 3 other kids. We were armed to educate her, but she was already on board. Looked in our son's nose and said there was definately some sort of infection. Not yet sure if it was strep or not, but we are moving forward on antibiotics. My son doesn't have any allergies that affect sinuses and his OCD doesn't involve nose picking. Looks to be either sinus infection or strep in the sinus. She also ran a number of blood tests. Looking forward to finding out the results of the tests and seeing what happens once we get him on the new antibiotic. Thanks for mentioning the sinuses!

Hi EAMom, My son did not have a throat culture with this last round of strep. Our younger son tested positive for strep in March and the next day our son with PANDAS had a sore throat. We got him on amox without having the culture done. Thanks for your email as we have an appointment tomorrow morning with our pediatrician to test for strep and we will bring your reply with us, along with lots of other info on PANDAS. Interesting that you mention the strep could be in the sinuses as he has had one bloody nose just about every day for the last 2 weeks. Prior to this, no history of blood noses. May not be related at all, but something for us to look into. Really appreciate your info! It gives us some direction to take with the doctor tomorrow.

Thank you DUT! Tonight was an especially difficult night with symptoms. I will be giving Dr Hemplar a call tomorrow.

I am pretty sure the scratch test only measures IgE allergy reactions. To get an accruate read on food allergies, I have read that you do need to do the blood draw and have the IgG reactions tested because most food allergies are IgG reactions. The immediate and severe reaction we see like in a peanut allergy is an IgE reaction.

We found it is important to know the difference between IgE allergies and IgG allergies as we have read that most food allergies are IgG reactions. IgG related reactions are delayed and can take a few hours or a few days to surface. We had our son (now 10) tested about 6 years ago for allergies at the pediatricians office and he came back with no allergies to wheat, diary or gluten. The problem was they only tested his IgE reactions. In February of this year, we had him retested using a different doctor and a different test and he still came back with no IgE allergies. BUT - he came back with severe IgG allergies to wheat, dairy and gluten. The test we asked the doctor to do was called the ELISA allergy panel. It tested IgE and IgG reactions to 96 different foods. If you can't find a doctor to do the test, you can order it on line through www.directlabs.com. The test was the 96 General Food Panel, IgG & IgE (USB) Plus CMP-14. You can see a sample report on the website if you look up this test. Based on the results of the allergy tests, we removed all wheat, gluten and dairy from his diet. Within 3 or 4 days, there was a noticeable improvement with regard to what we call brain fog. Our son even commented that it was easier for him to pay attention to his teacher in class. He used to get very frustrated when doing homework. Now, he gets it done on his own and even works ahead. It used to be a struggle to get him to sit and read for 20 minutes. Now, he will sit and read for an hour on his own. After a recent strep infection a month ago, we are struggling with increased tics and OCD behavior, but we are still enjoying the new improvements in brain fog that I mentioned above. I would say from a parents perspective (non-medical), the changes in diet have made a huge difference. I feel we would be seeing much worse PANDAS reactions from his strep infection a month ago if we had not made the changes in his diet.

Thank you so much for your suggestions. I think I heard of Stephen Glass about 6 years ago when the daugher of a co-worker was diagnosed with autism. I am going to give these people a call. Thank you again!