Rachel

Keep us updated. I'm not sending one off to college but it would be nice to cut down on some supplements. I would like to create a mutivitamin without the B's. I will look at this site over a little more.

I have been told that the best time to have this test, is when your child has had an increase in symptoms and having a really bad flare. My son had this done right after he had a double ear infection and his symptoms had all increased. Every test was highly elevated. His first test was in an area that showed not negative and not likely. It was in the middle and you could not rule it as unlikely or likely. That is the reason why my son had this test ran again when his symptoms had all increased. My son's case has been an extremly tough one to figure out. He has been put into the PANDAS study at OU.

Sf mom Will chronic infections keep the IgA low in the system? I was rereading your post and wanted to make sure that I had not misread your post above. My son has a low IgA and this would make sense with his condition . The gluten antibodies and mold antibodies have been checked and they are negative according to recent test results. Momwithacause Hang in there. I am new to all of this and am learning learning along the way. If your doctor will suggest more testing, I would get as much as I could get done. It's hard finding all the pieces that are making your child sick. Even harder if you have a doctor that does not believe in this illness.

Good information to know. I have not ordered anything from them. Thanks for posting.

Quannie I would like to know more about the New Chapter Turmeric Force. Are you using the lowest dosage or did you have to go up on it more to see the results? I want to try this with my son. I consider this a food supplement and shoud be safe to try. My son does not have any food allergies. I tried to PM but it would not go through. My son was given all the premeds before treatment and they gave him saline with the infusion. His headache was a little better yesterday but he says his vision is still fuzzy. Is this normal after an infusion? This makes more sense about it hiding in the joints because my son complained of joint pain in the knees, ankels, and hip when trying to walk when this started 3 years ago. This is finally beginning to make more sense. I'm just so glad that the doctors are beginning to get this figured out. I could just cry because it's been such a long and stressful haul. Just hope we start to see some improvement after some more treatments. PEX is not out of the question but we are waiting to see if the IVIG will be enough for him.

Hi Jaketyler, I don't know what to tell you about the ABX. I would ask your doctor about this. My son had been on them for 4 months and caught strep twice. So I guess that was enough of a tip to his doctor to try something else. The doctor put my son on a shot of penicillin called Bicillin L-A every three weeks. BTW Tracy I threw out the tooth brushes today. I had not thought of that but it makes sense.

Momwithacause, Celebrate these small changes and make sure you are keeping a journal about slip ups and medicine changes. If something is working, stick with it. My son has been taking Intuniv for the last 3 years. Before the Intuniv, he was taking Clonsapam but when puberty starting kicking in, it stopped working for him. He was ticing constantly. So I understand what it's like to have a noisy house with many restless nights. His vocal tic started when he was 10 years old. His current doctor thinks that he will eventually be weaned off this medicine when some other things get turned around in his body. Try not to get impatient with healing, it's coming. It just takes time.

First off I want to let you know, I don't have too much experience with this but I know this can be a scary experience. My son is a little over weight and I can let this go for a few days but I have set limits in this area with him. My son does have problems from time to time with eating. He tells me that he does not feel hungry. So I tell him that he has to eat so he can at least have the energy level to sit up and at least transfer in and out of his wheel chair. He also knows if he gets too weak, I will have to take him to the hospital. He does not like hospitals, so this is motivation to eat something or be stuck in the hospital. I notice that this is more of a problem when he is on daily antibiotics. He has been switched to a shot and I am not hearing this comment. So, I'm beginning to wonder if the daily antibiotics were causing this problem. He has been on antibiotics since last December and was just recently switched to a penicillan shot every three weeks. I would be checking with your doctor to see if the antibiotics are causing the problem.

My son has vocal tics and he is 14. When he was much younger, he would have spells that would last 30 minutes or longer. Eventually we were able to get this under control with a medication called Intuniv. However, my son also has problems with serotinon and dopamine levels according to many different sources of testing. This medication does help regulate this in the brain. In January of this year, my son was started on a methyl B-12 shot. This shot has really helped with fatigue levels and has not increased his vocal tic. Since more supplements were being added to help my son with his fatigue levels, my husband and I decided to do the 23 and Me testing on my son. We did not see more improvement when we added these supplements and were afraid we were wasting money. We really wanted to know if my son needed Methyl B-12 to help his body function better. According to the 23 and me test results, he does need methyl B-12, but some of the supplements that were added were a hinderance to getting the methyl B-12 to absorb efficiently. It does take some work to figure out the test results, but was well worth the effort. Dr. Amy Yasko has written a book and has developed at test that's almost the same thing as the 23 and Me. However my husband and I chose to the 23 and Me testing due to the cost involved. It would be a way for you to know if your son needs methyl B-12 or if he needs a different form of B-12.

Thank you so much for replying to the post. I have had such a hard time understanding all of this. My son's headache is a little better this morning. He has also had his methyl B-12 shot this morning and I believe that has also helped. Our cardiologist in Oklahoma is in charge of all the treatments because our insurance will not let ds be treated outside the state. He will be having another treatment in 4 weeks. He is also on Bicillin L-A penicillin shot which will be given every 3 weeks. Surfermom and Powpow What is a normal dosage for IVIG for kids? Does it vary? My ds was only given 40grams but he could only tolerate a 25 infusion rate. So he had to spend the night in the hospital. I will ask our doctor about the other medications. We would have never figured this out without the help of the Texas doctor, PANDAS research doctor, neurologist, and the POTS research doctor. Doctors are beginning to figure out that POTS is related to an autoimmune problem. Our cardiologist is able to collaborate with these doctors to get our son on a road to recovery. He has told us to be patient because it may be a long road to recovery.

My son had a delayed reaction last night. He came home yesterday and late last night he ran a low grade fever 100. He broke out in a rash but fever and rash were gone after 2 hours with treatment. His headache is a little worse but this may happen after this type of treatment. His doctor is pleased that everything has gone as well as it could.

Let the healing Begin! My son is receiving 40 grams of Carimune IVIG. His infusion rate is 25. The best way I know to explain this is that the neuro immune antibodies have been found that affect the heart and brain. This has caused the POTS and all his other strange unusal symptoms. He also caught strep agan this month while on an antibiotic. If all goes well, my son will be released later on this afternoon. He did have some type of reaction yesterday but things did calm down. The doctor is not sure if the rash occured because the infusion rate was raised or because of an shot of pencillan. However, they were quick to act with benadryl and the rash was gone within an hour. IVIG was started again at a rate of 25 and my son has not had anymore problems. His headache did increase some but we are trying to keep him hydrated as much as possible. Strep seems to be the main problem but the mycoplasma IgM antibodies are going to be watched. If all goes well, my son will be released this afternoon. In another 4 weeks, my son will be coming back for another treatment.

This last week my son caught strep throat again while on an antibiotic. The first time happened back in January. With some recent testing, some doctors are begining to suspect that my son had rheumatic fever when he was young. This testing is being done through some research studies and shows these antibodies have affected the heart. My son has also had testing in the past that showed elevated Anti- Dnase B Strep antibodies. Which I think this means he has had past infections in the past. I was told that it was not normal to be getting strep while on an antibiotic. So my son is going to getting a Penicillin shot every 3 weeks and he is also going to be getting monthly low dosage IVIG trestments. Our insurance has approved of the IVIG. The IVIG treatment will be done inpatient this weekend. Our cardiologist is in charge of the treatment. He is aware that my son has a low IGA. I can only think of a couple of times when this rheumatic fever might have happened. This problem is also caused by strep. If it does not get cleared up, does the strep hibernate in the body and caused the antibodies to build up? With this type of situation, I could see how this would affect blood pressure and heart rate. I am excited that my son is going to be doing the IVIG but I'm hoping it won't make his symptoms worse. I have explained to him that this is a possibility and that it may take several treatments before any progress is made. I am going to contine to work on his diet and his cardiologist is also interested in see his 23 and me test results. He also told me to go ahead and try P5P with my son at night to see if it will help with sleep issues. Since this strep infection started, he is having trouble getting to sleep.

My son's IGA is 47. However, the doctors tell me that he is not deficient. Our son is getting ready to have IVIG treatment this weekend. For IVIG treatment to be sucessful, you will need to watch the brand of medication that is given. Some have less IGA than others. Our cardiologist gives this to heart transplant patients and he has already taken this into consideration. He is incharge of my son's treatment because his medical condition is affecting his heart and blood pressure. I do not know anything about the other test but wanted to tell you not to be scared. Your son's body is making IGA which is good. My understanding is this IGA testing can also be affected by any current virus or infectiions that may be present in the body. So when your son is feeling his best and body is not over loaded, his body could be producing more IGA. Doctors and immunologist have told me that as long as the child is not IGA deficient, then IVIG treatment is not out of the picture. Just make sure you have a doctor that knows the ins and outs of this treatment.

Today was so much better. I added another B Right supplement at noon and took away the old B- complex. I will do this for the rest of the week and see if his tremors and shaking will go totally away. BTW my son's sufates levels 4 days ago were over 1200mgs. Today they were just over 800mgs. He will not be drinking any more cow's milk for awhile. His favorite is almond milk and I am cooking with it. Our cardiologist called today with some other news about heart antibodies and my son's current strep infection. It's not normal to get strep infections on antibiotics. He has also been talking to some doctors about my son's condition. He has decided that he wants to do a LD of IVIG to boost his immune system. He has already contacted our insurance and it's been APPROVED already. I'm kinda in shock right now. My son is supposed to have the treatment this coming Friday.

On the COMT my son is -/-. From reading heartfixer, I understood that my son needed methyl doners. I will go back and read again. My son does not have any issues with SOUX. I understood if you had those issues that you would need to use the hydroxy b-12. LLM and some others on the post might be able to clarify this some more. This does seem to be a little confusing to me also. I am seeing improvement with my son's tremors and shaking. They are much less in the mornings (almost gone) since I started giving the B-Right supplement after breakfast. I'm wondering if this has something to do with the P5P (B6). Later in the the day around 3:00pm, I see a noticable change (the tremors are worse), so something is working on this end of the deal. If I see this again today, I am going to give another one after lunch and see what happens. Edit My son also has a homozygous MTRR A66G and hetrozygous VDR Bsm and VDR Taq. I see improvement with my son's fatigue levels on days that he takes his methyl B-12 shots. I really think my son may need both kinds of B-12 but I am leaning more towards the methyl-B 12. His BHMT 02 is hetrozygous the rest of these are -/-.

Hi Everyone, I wanted to share some more resources that I have found online. I don't know if anyone has heard of Dr. Myhill. She works with CFS patients and also helps them with methylation problems. She has a basic jump start program to get the methylation process started but tells you to start low and slow. Her old book is online. I will post it and her lastest article on Methylation. She also mentions Dr. Amy in her article and to check out her sites as well. I have just started my son on one new supplement, B-Right. In another week or two, I will start him on 500mcg of Methycobalamin once a day and then gradually up the dosage week by week. I will not be giving it on days that my son is taking the methyl-B 12 shot. Eventually I will add in the Phosphatidyl Serine. Dr. Myhill does have a new book out and I will also be order it to read. Here is the article and her old book. Happy reading. http://drmyhill.co.uk/wiki/CFS_-_The_Methylation_Cycle http://www.thyroidhelp.org/ViP/Diagnosing%20And%20Treating%20Chronic%20Fatigue%20Syndrome%20-%20Dr%20Myhill.pdf

When my son has an infection or virus going on, these symptoms all show up. I would get some blood work ran. My son will not have a fever with strep and we are dealing with that again. Good luck and hope you get some answers soon.

I decided to go ahead and start my son on B-Right Complex (Jarrow Formula). It contains all the B complex vitamins but has 100mcg of Methylcobalamin, 10mg of p5p and 400mcg of folic acid as Quatrefolic. His moods have been really good considering that he has strep and so far it has not set off his vocal tic. I will try this for a couple of weeks before I add another methyl B-12 supplement. My son does get Methyl-B 12 shot every 3-4 days, so I'm really wondering how adding this supplement will affect his body on those days.

My son did a urine test to check for sulfate levels. It was above 1200mgs. I have removed all dairy products to get his protein levels down. I will have him test every 4 - 7 days to see if this is helping. If not then I'll start looking at his diet. Since his testing showed the +/- CBS and +/- BHMT, I will be trying to lower sulfate levels first. I am going to see if our doctor will run an offical test to check for Sulfates and Ammonia levels. I found a really interesting website on Sufates and how to bring the levels down with diet. Thought I would share. Happy reading. http://www.learningtarget.com/nosulfites/book.htm#Top

Thanks Missmom. I will try the mucinex. The abx prophylactic dose may not be at a high enough dosage. I will ask our doctor about this because I was wondering the same thing. Our cats have not been checked, so that will be my next step. I did take him back in the first time this happened in January. The strep culture was negative and he was also changed to a different abx prophylactic. My son is a kid in an adult size body. He is 5'10" and about 180. I will try the mucinex with him. Our cardiologist approves of this mediction for him. Thanks for the suggestions.

This is the second time this year that my son has had a strep infection while on an antibiotic. Is this normal? Since this year, he has also started testing positive on a rapid strep test. In the past, rapid streps always showed up negative. The first time this happened, he was on arzithromycin and this last time, he was on Bixan. He is on these antioboitics because of Mycoplasma P. Is my son going to have to go on a stronger antibiotic to get rid of the Mycoplasma P and to keep from getting a strep infection. My son does not go out in the public, he's home bound. So why is he catching strep. No one else is sick in the household. Just frustrated and need to understand why this might be happening.

I did not know this about Quercitin. This would be a much better option than taking over the counter histamins. I will ask our doctor about this.

Good article and it does make sense.

Could your daughter do a nose spray like Flonase?