To Ronnas from Brett

[brett]

Hi Ronnas, thanks for your response, I think Allison had mentioned you in one of her responses to me, and said your info might be helpful. I decided not to put Jesse (my son) on the ORAP at this time. I am trying amoxicillin right now and he is on a low dose of Tenex (1mg per day split half/half a.m/p.m.). While he has lots of jerks/twitches/spasms/tics, he is functioning okay and coping with it. You are the only person that has told me that you had experiences with the movements in sleep, and that helps me feel a little better because so far no one else had reported that at all and it is freaking me out. 2 doctors initially thought PANDAS but blood tests were normal (DNA(DS)ABS and ASO AB); however, the more I read the more I realize that it could still be PANDAS, particularly as my son was constantly sick as a child (frequent ear infections, months of preventitive antibiotic use as an infant, colds, pneumonia at 4 months, one bout of strep/scarlet fever when he was 5 or 6), also milk/soy formula allergies as a baby. Of course I never even considered any of these things until I came to this forum-site and read other people's stories. In addition this summer he was at sleepaway camp for 7 weeks, living in a bunk with 12 other children in the broiling heat that this summer had, as well as much less sleep and many more activities than in his usual schedule. Interestingly, for much of the summer his voice was extremely hoarse and I had the camp dr. check him (no strep test done though), they said he was fine just tired from camp life. When he got home from camp he was exhausted like a zombie and everything went downhill from there.

At this point I think I will give the amoxicillin for a few weeks and if I see no difference I will request another antibiotic such as clindamycin or keflex. We are trying to be patient and see how this plays out. He has not gotten any worse since the explosion of symptoms almost 3 weeks ago so that is encouraging. Right now I am considering food allergy testing although I am unsure as to how to go about it, if you could advise I would appreciate it. I am also considering the supplements at the Bontech website. Have you done the supplements? I would like to wait a few weeks to see how the medications play out first before I add anything else. It just amazes me that others have gone through this just as I am right now. Anything you might add or respond to me is greatly appreciated. Thank you so much. Brett

[Ronnas]

Hi Brett,

 

Although I don't have much time to post tonight I just wanted to let you know I saw your post and will try to give more information as soon as I have a moment. My 5 month old baby has been sick so it has been a bit crazy the last few days.

 

I sooo remember my own desperate search for information when my son was 5-6 years old. We have done many things. I do use bonnie's vitamins, essential fatty acids, removal of milk (casein), corn, eggs and chocolate from Kurt's diet and more recently treating him for yeast. As well for a time we limitied TV etc and this really helped.

 

I would HIGHLY recommend Sheila's new book...I have not read it yet but I know it will be good! How I wish I had a book like it 4 years ago! "Is this your child" by Doris Rapp is also very good and food elimination diets are discussed. We used a single food elimination diet...it takes longer but is easier.

 

Hang in there. Make sure to take care of yourself! Keep reading and post with any questions...it is a great bunch here! With time this all gets much easier. I will sit down and post more when I have a more quiet moment...Ronna

[brett]

Hi Ronna, thanks for your reply, I remember what it is like to have a 5 month old baby! Very tiring. Your posts are very helpful. I am trying to be strong but most of the time have so much anxiety under the surface, particularly when watching Jesse throughout the day trying to contain himself. It is so upsetting. I feel so helpless, I have no control over what his body is doing to him. We had put him back on the amoxicillin for 2 days but believe it or not both my husband and myself felt it made him worse! How is that possible? We felt he was at least stabilized on the Tenex, but after 2 days of amoxicillin and he became super hyperactive and many more tics/movements. So we decided to just take him off it on our own. It is weird doing all of these medical things/making choices on our own against what a dr. says. I have to trust my gut instinct though. My husband and I are both allergic to penicillin so we wonder if that is why it is making him worse? I am going to ask my dr. friend to give him another antibiotic, I think Keflex was mentioned by you as a good one? I found a dr. in my area from a link off of this site that practices nutrition and holistic alternative medicine, they do food allergy testing, I am going to try and make an appointment with them next week to see if they can offer help. I am going to have Jesse food allergy tested, a lot of people on this site recommend the IGg testing. It is a start anyway as no dr. can explain to us what is going on with Jesse, they say just give it time and see what happens. I am okay with that but find no harm in exploring options that could help to stop what his body is going through.

Anyway, thanks for listening, whenever you have the time and advice, please post. Thanks. Brett

[ad_ccl]

Hi Brett,

 

You might want to do a search for posts from Heather -I think that was her name, she posted before I came here. Her son also had PANDAS - I think, and got much worse on the antibiotics - I think in the end it was the antibiotics aggravating a yeast issue - the colouring in the antibiotics can also aggravate some kids . Maybe in the past your son may have been able to handle these two triggers, but him immune system is in overdrive. I think ultimately Heather's son got much better after she treated him for yeast. I do not remember all the details but do remember he got much worse on antibiotics the way you are describing.

 

Ronna - sorry the baby is sick. You must be exhausted. Thanks for your reply to my other posts. I am thinking more and more of the yeast issue - I think nystatin is something the ped. prescribes - so I will have to talk to him.

[mommaonamission]

I too plan on looking into Nystatin. I believe it is pretty potent, but can be fine in low doses. I have read good things about it. Things continue to be getting better for my son. I think it is attributed to the Carnosine. Tics are still there, but decreased significantly. And I find comfort in the fact that I haven't tried to resort to any medications. If I hadn't found this site and others like it, I might have taken the docs word for it and put my son on meds before looking into alternatives.

 

Brett, I know what you mean about it being so amazing what we all share here. Don't you keep asking yourself how this happened.

 

I hope your son continues to progress. At first, I thought my sons tics were triggerd by the amoxicillian, because vocal tics that were never there before, surfaced with full force within the evening of being on the antibiotics. I then read about the PANDAS. So, I could never tell if his tics exploded due to the strep infection or the antibiotics. He was never a sickly child, and had not been on amoxicillian in 5 years or so. I hope the antibiotics work for you. At this point, I would definitley try it over the Orap. Good luck!