looneymom

The Betty Crocker website has some good recipes. The one for chicken nuggets is not bad. However, I found a better way to make the batter stick to the chicken . Roll the chicken pieces in white rice flour, dip in egg whites and roll in corn chex mixture and then bake in the oven. I have not tried fried chicken but the sparkspeople have several gluten free recipes with calories counted.

Thanks for sharing. I will look for this. I may have to special order this. I am beginning to have to do some of this anyway.

Misery loves company. POTS is not an easy thing to deal with and it's great to have people still on the forum that are willing to share their experiences.

I am not seeing any improvement in symptoms yet. He should be having another low dosage IVIG tretment this weekend or coming week. I am waiting on a call from the doctor. The ward at the hospital may not have any empty beds yet.

Looks like Oklahoma just gained another doctor. If anyone has had Rhumatic fever, you might want to check this article out. Sydenham's chorea is a movement disorder and has been associated with Rhumatic fever. These antibodies attack the heart and organ muscles and cause neurological problems. This sounds like it could be a possible underlying cause of POTS in children. However, in my personal opinion, I think it's time that strep and mycoplalsama antibodies test be ran on adults to see if these antibodies are in the system. If so there will surely be a shortage on antibiotics, IVIG, and PEX.

http://www.houstonpress.com/2014-06-19/news/pandas-medical-mystery/

Here is some other interesting research on the same topic.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3645882/

http://jid.oxfordjournals.org/content/202/7/1059.full

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3724245/

Keep it up Katy. Sounds like recovery is going well. Take your walks and don't over do it. Keep us posted. Sending gentle hugs.

Very interesting article. Thanks for posting.

Tyler's strep culture was negative. It's hard for me to believe this may be all viral. He cannot tell any difference in his throat. I'm going to request a strep titer test. He had one done back in December. It will be interesting to see if the antibodies are lower or higher.

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Hope you are feeling better. The weather and the stress of Mom being in the hospital brings added mental stress. Any added stress seems to make POTS worse. Feel better soon.

Hang in there Becia. Tyler had to have this procedure done when he was in the hospotal for 10 days because the iv line kept messing up. This procedure is not fun to go through. I remember it well with my son. The best thing is that you will get the fluids that you need in the comfort of your own home. Having the 30 day trial run will let the doctor know how much you need these fluids. Do keep us posted and hopefully you will not have any troubles with the line. Tyler had his in for 8 days and had no problems. Be strong and sending gentle hugs.

Thank you so much for responding. Our doctor is going to do a few things different pre and post treatment. He is hoping it will end any pre or post IVIG allergic reactions. Sounds like your doctor is doing the same. It really is exciting to hear that your pain and headache levels went way down. That's what my husband and I want for Tyler. However, this strep throat is not helping and making symptoms worse. Does your blood pressure still drop low with infections? Tyler's has been lower and I have had to increase his salt. I'm hoping the antibiotic will kick in and help this out. These infections play havic with his cardio and nervous system.

I do think that something is going to be done differently with the antibiotic. We are waiting on the results of the culture. I'm just hoping that strep is the only thing we are having to deal with right now.

Tyler is strong enought to transfer in and out of his wheelchair and he can do functional things with arms and hands. He folds laundry, puts clothing on hangers, types on computer, and loves to paint when he is feeling up to it. Every week, he does try to do an exercise that he would do at physical therapy that would not cause any issues. He tried arm raises the other day. The first three were fine but on the 4th one hard tremors started in his arms and hands and then spread all the way down to his feet. He shook pretty hard for about 20 minutes and then it gradually eased up. However, he never did get breaks from his tremors the rest of the day. Our doctor wants him to try this because it is the only way of figuring out it the tremors are getting less or if his body is responding to antibiotics and other treatment. Tyler really wants to get back to doing some exercise because he had lost 30lbs the first time around. He was very motivated and excited. Starting with a physical therapist is a good thing. If we can get the tremors to stop, our cardiologist is going to order home health care and they will send out a physical and occupational therapist.

How did you know when it was safe enough for you to go out and be in the public? Did your doctor figure that out with blood test? Our doctor does not want Tyler out since he seems to be catching strep on a regular basis right now. Tyler does not feel good enough to even want to take a short car ride just for a change of scenery.

My son has low blood pressure but he has POTS. However, there are other things that can cause low blood pressure. Before my son was diagnosised with POTS, CFS was being considered. There is a blood test for this and a rhumatologist can do this test. You mentioned EDS. Does he see a specialist for this? If EDS is part of the problem, I would suggest you see a specialist this area. Exercise is hard for an EDS person. Hang in there, you'll get some answers soon. Just don't let a doctor convience you that its all your son's fault. That's the easy way for them to say " I really don't know how to help you with this problem".

Clonidine will make you tired. My son cannot take it during the daytime hours. Do you have a doctor would check neurotransmiters? It hard to keep these things in balance if you are hyperpots. If you have too much GABA, you will also feel tired al the time. So if you were having trouble with fatigue before POTS, I might research the conditions that might cause fatigue because this could make your POTS worse. Hypoglycemia comes to mind, MONO virus, iron defiency. It's like looking for a needle in a haystack. If you are dealing with low blood pressure, this will also make you tired.

Are you able to exercise at all? When Tyler was, it did help with energy levels. However, he had to be careful on how much he did. Too much was not a good thing for him. A good physical therapist can help and make sure you do not over do it.

Hi AG,

Hope you are feeling better this morning. I was wondering, what symptoms got better after the IVIG kicked in? I have not asked the doctor what I should be watching for. Tyler's worst symptoms are the headache. body pain, and tremors. I can't wait to hear the words " my headache is gone".

Good find. Vitamin C has many benefits. We use this and L-Lysine for virus relief.

The culture was done. Should know results by Friday at the earliest and Monday at the lastest. The doctor said it looked like strep in all of it's glory. Just hope the culture will come back positive and the stain can be identified. Tyler had already taken two antibiotic pills but this was noted on the culture.

I did have Katy on my mind because of her surgery is today. Hope she comes through it ok. Sorry for the confusion.

I did hear from our cardiologist. He wants us to go in and get a culture done. Depending on what type of strep it is, there is still a 50% chance that it will show up. Tyler's throat looks as bad today as it did yesterday. So I'm going to see if the doctor will do another rapid strep.

If strep is it, then we probably need to do a titer check since it has showed up 3 times in the last 6 months. I suspect it will be done at Tyler's next IVIG treatment. Since the strep did show up on the rapid test, he does want us to go ahead and do the antibiotics for right now. I'm just hoping it's not too late to show up on the culture. Well I'll post later if they do the rapid again. I've got to leave here soon for the appointment.

So much helpful information. I suspect that I may be dealing with this soon on my son's behalf. The port sounds like the better way to go. I hope my son will be given the option for a port if needed. However, does this area need to be covered up when bathing. I think the Picca line does but was not sure about the port area?

Tyler still has his tonsils. However, the last time he had an outpatient procedure, his heart rate dropped down to 27. So I'm not sure that removing tonsils is an option at this point.

I am waiting to hear back from the doctor. I called the office this morning and did speak to his nurse. She is very good to get meesages through to him about Tyler. I look for him to add another antibiotic. Tyler has tried Bixan and caught strep throat while being on that one also. I would also like to see a wide spectrum antibiotic added.

Katy-- Does the hopital give the rocephine shots or do you go into your gp? Or can they be given along with the IVIG? I have hear of these shots before and I have wondered about the resistnce to pencillian. Tyler has been getting the Penicillian g shots every three weeks. He had his third one this last Sunday. Our cardiologist is most likely having to rethink Tyler's current treatment plan.

I have been reading that it may take several treatments before any improvement is seen. I do think we are on the right track with IVIG but I'm hoping that we do not see any reactions at all with this next round of IVIG. I did send our doctor the IVIG comparison chart and he did say he would look into this matter more. He is open-minded and does not want any reactions to happen after we get home.

Tyler came down with strep throat again. He had just been given a penicillin shot on Sunday and woke up running a fever 99.4 Monday morning. He complained that his throat hurt. So I checked the back of his throat and it was swollen with white puffy patches. I would normally have waited 3 days before taking him in to the doctor but took him yesterday afternoon. He tested positivie. He has not been out of the house. I knew strep could hide in the body, but I'm wondering how long it is going to take to get it out. I have called our cardiologist to let him know and I'm sure that he will respond. This is the first time for Tyler to get sick while taking the treatments. Is this normal? I thought IVIG would keep him healthier.

Praying for you and hope all goes well today. Relax and rest! Wishing for a speedy recovery and post when you feei up to it.

If you can get your catecholamines levels checked that might provide a helpful clue. Tyler had one done thorough Pharmasen Labs. It was a urine test nurotransmitter and it measurs Serotonin, GABA, Taurine, Glycine, Glutamate, Histamine, PEA, Dopamine, Norepinephrine, Epinephrine, and Kynurenic Acid. I think the test kit can be ordered online. However, you may have to have a doctor sign off on it to get your insurance to pay on it. It's one of the best test that Tyler has had done. Tyler had high levels of Glutamate, Glycine, Histamine, Dopamine, Norepinephrine, and Kynurenic acid. Giving Tyler the extended release clonidine helps calm his body down at night and helps with sleep issues.

Never heard of this. Is this a gentic condition?