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looneymom

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About looneymom

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    http://www.survivingpots.com

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  • Gender
    Female
  • Interests
    I love to cook and read mystery books. I also play the piano and stay active with my church as much as possible. Without faith in God, I know this medical journey with my son would have been impossible. He has provided the comfort and strength needed.

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  1. So happy to hear of your improvements but sorry the last medication did not seem to help. I have a friend that is using IVIG and Rituxan combination. She has been on this combination for awhile. However, she also does a plasma exchange treatment every 3 months to keep lowering the autoimmune antibodies. Eventually, the goal is to stop doing the plasma exchange. Don't know if this combination would be a possibility for you but thought I should mention it.
  2. My son has tried this program. He can do the weight program but the exercise part is still above his ability levels right now.
  3. I ordered the the 23 and me testing for my son when it was on sale for $99. They do that special around Christmas time. However, you can get the testing done free if you have a diagnosis of Depression. They are conducting a study right now and needing participants. You must be 18 years or older to participate. You will probably find the study on their website. I'll see if I can find the link and post it. After you submit your spit sample for the testing, it takes 6-8 weeks to get results back. You will need to keep your data in a safe place and then you can upload it to other websites suc
  4. I have heard really good things about Dr. Goodman at the MAYO Clinic in Arizona. He only sees adults but will see very complex teen cases. I just had a friend report back on her visit. She had to fly out and see him. She was there for a week because of all the testing done. Hope you find answers soon. Your case does sound complex and you really need a doctor to help get you on the right treatment plan.
  5. Hi Samantha91 My son had many of those sym[ptoms in the beginning of his POTS journey. I'll make a few suggestions. Exercise on the floor only and then do sitting exercises in the chair. My son did a lot of floor exercises and then eventually moved on to a recumbent bike. My son had very weak core muscles because he could not stand or walk for several years. He had POTS with autoimmune antibodies. Get your B vitamins checked. They help with energy and chronic fatigue. My son still has fatigue problems from exercise and from doing school work. H eis a Junior and does online school but
  6. It's been awhile since I have given an update on my son. He is still on POTS medications and supplements. However, he is swimming twice a week and lifting weights twice a week. So far, he has not had any relapses with the autoimmune antibodies. He had blood work several months ago and the strep was totally out of his body. He does get dizzy if he stands up to quick and his body does not tolerate heat. He has been able to stand and walk since November 2015. He had an upper respiratory virus in February and had to rest for 3 days. However, he was able to get right back up and continue where he l
  7. I was looking at your symptoms. Have you been checked for deficiencies in B vitamins such as B-12 or folate? Methylation problems can cause energy, insomnia, and severe brain fog issues. You might consider doing the 23 and Me testing but first find a doctor to help interpret the results. Dr. Amy Yasko has written a book called Autism Pathways to healing. You can read this book free on her website. She uses a test similar to the 23 and me testing. She has a website that will accept the 23 and me test results and it will give you a free report on what supplements could support your methylation
  8. My son takes Zoloft and is able to exercise. However, SSRI can be more trouble than worth because of side effects. You might want to have a neurotransmitter testing done to see what's out of balance before trying a SSRI. This testing can be ordered online and it comes with a report of what supplements can correct the problem. Some neurologist and functional medical doctors will also order these test. My son had this testing first before going on the Zoloft. Zoloft just helps his body recycle the serotonin. My son actually needed supplements that would help his body make serotonin such as L-Try
  9. I am so sorry. Hope things turn around soon for you. Come to Oklahoma and see Tyler's doctor. He treats adult patients now.
  10. My suggestion is to find an EDS specialist for your daughter. I know of only one specialist, Dr. Tinkle from a friend. Her daughter is diagnosed with EDS. There can be other underlying conditions with this diagnosis. So until you know what you may be up against, please get her checked by a specialist first.
  11. I am also a stay at home mom because my son had a severe case of POTS. He was diagnosed when he was 11. Welcome to the forum and hope you are to find answers for yourself and son. POTS is a rollercoaster ride. Never a dull moment with this illness.
  12. Zoloft and Deplin were very helpful for my son.
  13. It's been awhile since I posted on my son. He caught a nasty upper respiratory virus with the cough and sore throat. He tested negative for flu. He is still standing and walking a week later! He is doing floor exercises to maintain core muscles and has been using the floor peddler.He has not done any aerobic exercises in a week. His doctor said to try some this next week if possible and see if he can start with where he left off. If he can do this, it will be amazing. This is the first time he has been sick since he finished his plasma exchange treatment in July 2015. His doctor and I really d
  14. My son takes .2 extended release clonidine but also take some supplements that help him relax before bedtime. I have tried to wean him off of the clonidine but it also relieves other symptoms such as night sweats and adrenal release. However, I have been able to drop his dosage from .3 to .2 and his doctor is pleased. Other supplements that help with relaxation are GABA (ammino acid), B6, Magnesium glycinate, and L-Tryptophan which is also an amino acid. My son no longer takes the last supplement because it really decreased his appetite. However, my oldest non-pots son does take it a night and
  15. Hope this new form of IVIG helps you. If not, maybe you will need to consider plasma exchange to get some of the antibodies out and then be able to go back to IVIG. Wishing you the best. My son was not able to do IVIG. It caused many problems and he had to do several plasma exchange treatments.
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