kclynn

Please talk to Dr. Abdallah about this. It could be your meds or the way you are taking them. Also, my son has expressed this exact same thing.

Sally22, I too think it is too coincidental, both the tremors and jerks came on at the same time he had a huge pots crash last year, got better when everything else did. Anna, before the focalin he had ALL of the movements prior and has even had them worse. Maybe related but .. You made some interesting points, though. Kids are making fun of him at school again. Breaks my heart in a million pieces.

Puppylove, Last year my son often had his homebound classes while laying on the couch. Can the teacher come more often for less time. My son's came everyday for an hour. Make sure that it isn't the convienience of the the homebound teacher that is having her use up your precious state allowed time. Keep track of the time she is there, also.

We have noticed an increase in tremors for my son during and immediately following eating. Today I gave him a light meal (two lasange rolls and 4 oz papaya juice) We haven't figured out any triggers and I usually pay attention to msg, use organic food, no hfcs, etc.. I decided to take his BP during this time to see if there was anything happening. I expected it to go down but it went up! His pulse stayed in the 60's. I took the first reading immediately before he started and then over 45 minutes. 5:15 112/67 5:25 130/78 5:40 141/79 6:00 122/71 Is this normal? I just hadn't expected it. His nausea was also increasing as he was eating as usual. Anyone else have this? He takes Midodrine, Florinef, Clonodine and supplements. He has had the tremors even before meds and they got better over summer and have been back for several months. Thanks!

My son's high school friend have made those comments. Also, I put in writing to all the teachers and personnel that there may be times when he may appear to be intoxicated and that in fact it is due to lack of oxygen to his brain. We have had no problems as a result.

My son prefers the middle He is miserable in winter, though. I think the worst is temperature changes. He is better in the heat unless it gets over 90's and humid.

Anna, Thanks for all the info. He has not been diagnosed as EDS. He is quite flexible, knees and elbows go back a bit, thumbs go back but he can't but them near to his wrist, can touch the floor with his palms standing flat foot and can do the splits. He also gets myofacial pain especially in his upper back. I had Bev Karabin look at him but she didn't feel that any of this was to the extent of EDS. Issie, I wonder why that makes it worse. Doesn't seem to have that effect. His is always worse when tired but of course the tremors are extremely fatiguing themselves but don't allow him to sleep! It is weird how the Focalin seems to help but then they come back as it is wearing off. Obviously he can't take Focalin at night. The Focalin isn't causeing it I am quite sure as he has had this since last year and I am quite sure if he didn't have it he would be tremoring all day long when has this. He might still be tremoring some, but it isn't visible to me. He also has horrible GI troubles for months and months, and they have always made the tremors worse as well.

Thanks Issie, He is 16 - yes, there is stress! I do think that makes it worse. I just gave him Benadryl to help him get to sleep. Seems to be working.

My son had a period of relative relief from these for almost a couple of months. Early December we added Clonodine, mid December Focalin and both have been very good meds for him, reducing anxiety, clearing the severe brain fog which increased his functioning, his activity and social life improved, he didn't miss any school, he has been really active. About 3 weeks ago the tremors started up and also the myoclonic jerks. I almost feel like his body is saying too much activity! They have been steadily increasing and are definately worse at night. They have always been worse in the evening. Does the Focalin wearing off have anything to do with this? So hard to see him like this again and he is having a hard time, too. His muscles get so fatigued and week from the constant spasms all over. It seems like he will get a big chill right as they come on. Cold air will do it but sometimes it is a coldness on the inside. What causes this? The old neuro we saw last year felt they weren't organic in spite of us suppling him with a Mayo dx of autonimic dysfunction (pots) which he said he had no knowledge of but did respect Mayo. The Dr. at Mayo had no opinion on this either even though I sent videos of some of his worst ones. It is very frustrating! They came on last year at the same time all his other symptoms did and subsided when his other symptoms were better over summer and have come back since this fall. Unfortunately it is in his records which makes me leary of seeing another neuro at that facility and they are the only ones to see kids under 18. Sorry this is so long, it just hurts so much seeing him struggle with this.

Did he recommend a low carb type diet? Does taking something like Metformin make sense? My son has his worse symptoms often with 5 to 30 minutes after eating, usually nausea,jerks, chills and even total weakness. Happens other times but pretty consistent following eating. Way back before his symptoms were full blown, mostly migraines and fatigue, he was slightly overweight (95th percentile) and his insulin was elevated glucose was fine. Lost a little weight, glucose fine, insulin fine. Don't know if there is anything there that has to do with current situation.

I know there are many very good nurses out there so don't to disrespect them but I have often gotten misinformation from nurses. When you get information from a nurse that upsets you or concerns you, best to get the Doctor's written records as you did. Glad you are getting somewhere. With good understanding maybe you will have more success with your treatments. Hugs to you!

The Gastro symptoms came on exactly when all his other symptoms did last year. We were hoping when his other symptoms were more under control, this would be as well. He has had ups and downs but the gastro symptoms have persisted. I did eliminate wheat for several weeks. No difference. I don't use soy products like soy milk, etc... I imagine he gets some but lately he isn't getting much of anything. He's lost 25 lbs unintentionally in the last 5 months. He was a little overweight and is now exactly right for his height and age, but certainly can't afford to lose anymore and losing all of this through not eating isn't good either. My concern is he is getting worse as time goes on. He had hormone tests in December and they were fine, Vitamin D was low...

GI Dr. wanted to put him on Reglan but I said no. Now he wants to prescribe Bethanechol. He is having a hard time eating ANYTHING. Husband had to go get him at youth group last night because he stood up and blacked out. He hasn't fainted before but I think it is more because he isn't eating anything than actual POTS symptoms, though those have been worse the last couple of weeks. Dr. says he has Gastroparesis but only seems to be addressing the upper GI symptoms. Will the lower GI symptoms improve when the upper GI symptoms do? He gets nauseous every time he eats no matter what it is and now is nauseous often just thinking about food. He eats a little here and there, but mostly applesause, a muffin slowly, a pbj sometimes. Then at night he usually has more success eating, though he still gets nausous, and within 1 to 2 hours he is in the bathroom for 1 to 2 hours with combo IBS symptoms and often comes out wiped out. He has reflux as well. He has lost another pound or so. What kind of testing should we look for them to do? The Dr. mentioned a scope, didn't mention motility studies but that doesn't mean he isn't planning on it, I just don't know. Haven't picked up the Bethanechol yet.

I know how it is from how things have been with my son. I was really upset because like you say, no one was texting, coming around. I did talk to the youth group director and the mom of some girls in his youth group and that next week he started getting some calls and visits. Up till then we had just been mad and frustrated but it is true that I think your friends maybe don't know quite what to do so maybe you do need to have an open discussion with them and tell them what YOU want and need from your friends. Teens have very, very short attention spans so don't be surprised if you have to be the one to keep up the contacts. We wish people would just be compassionate and know, but truth is most people need to be asked.

My Son uses it with good results (not perfect, but good). He also takes Midodrine and Florinef. Really helped the Anxiety and the myoclonic jerks.

My son was having significant problems, classmate asked him to boil water for macaroni in cooking class and he had no idea what to do, said they were like speaking a different language, same with all other classes, couldn't understand anything, became very depressed as a result. Bev Karabin recommended an adhd type med and the brain fog issues are gone, at least during the day. It has been a life saver. He is on an XR long release med so it does last until middle of the evening. Only trouble for him is appetite supression but that was an issue b4 and this med is essential to his well being. Can you ask about this? These meds are listed on a paper by Dr. Grubb in an issue of Circulation. You could google it.

That happened to my son with Naproxen, which I guess doesn't happen much. His hands swelled, his eyes swelled and had rash all over. I'm really surprised your Dr. did that because sometimes the the second time can be much worse than the first.

My son has muscle twitching and tremors. They started before he ever had any jerking episodes where he bangs his head and continue to this day, often in the evening. I don't know why your Dr. would discourage a helmet. Would it hurt? And it might help! Also, I don't know why the Drs. don't recognize the jerking, myoclonic jerks, and tremors as part of the syndrome. I think a few do, but generally not. Maybe I am wrong on that and would appreciate anyone that has any info about that. Our exp. is they want to put it psychological, but they came on exactly when ALL his other symptoms did, are worse when his symptoms flare up, are better when they all the other symptoms are better. At least Beverly Karabin said that though this symptom is on the edge of the symptom spectrum that it could be autonomic. Is seems there are a lot of people on here who have them.

yes, that is who you should call.

Hopefully the testing will be a start of being able to get you more effective treatment

I have WAITING to hear how things went. I KNEW Dr. A would help you, he is so wonderful. My son saw him and he is the one who put him on meds that got him back on his feet, literally. I think you live with in a reasonable distance from him and that will help you work with him closer than us who live in the middle of the country. So happy you found him. Did you ever join Dynakids? I know there are a bunch of kids just like yourself and I can tell you would love the forum.

Were your hands slightly off placement on the keyboard? I have done that and it looks like gibberish. But still, you could mention it to your Drs. or see if it happens again.

Adding to the rant - MY Dr. prescribed me and ADHD med for Chronic Fatigue Syndrome last week. Insurance denied it - Not covered for that diagnosis $200 a month I can think of a lot of meds they DO cover off label though....

Cautiously optimistic - my son says he "thinks" it is helping, at least with the nausea. He still has trouble with no appetite. I think maybe a medical anorexia as well from constantly feeling nauseous whenever he ate, then it turns into nausea whenever he thinks of eating because he knows it will make him sick. Mack's Mom our bottle does say it is only good for 10 days but when I talked to the pharmacist today, she said if he is going to be on it long term then she will figure out how to give us a months worth and we can mix our own every 10 days.

My son is taking a very low dose of Focalin XR. He hasn't missed a day of school since he started it around Christmas, the longest stretch in 2 years, and his grades are up as well (because he can understand what they are actually saying, with the brain fog he said it was like they were speaking a foriegn language). I hope it continues and he hasn't had any side effects but some people can have significant side effects. Ask your Dr. what is right for you. Edit: I should have mentioned that when is wears off all his symptoms return but the focalin xr lasts 12 hours so it does get him through an entire day, including homework time. He has had trouble with insomnia and that isn't worse and I dare say might even be better. Maybe his brain and body are getting a better workout during the day and he is more tired at night as a result.