Update on my son Nicholas

[abbe]

hey all,

 

Nick was diagnosed from Dr. t with Pandas last month. He was on Azithromycin for 30 days and during this period he tics were 98% gone, he was sleeping like a baby, cooperative, happy, playful, not emotional, . I was suppose to stop after 30 days and do pulse therapy on wed and Sound. I stopped on Wed. and by Friday his tics were back in his neck and eyes. I have been slightly paranoid about his best friend that he plays with since he tends to get strep but I can't tell him he can't play with his friends. He already doesn't have dairy, eggs and wheat and takes all his supplements , I just can't. I wrote this letter to dr t and I hope he responds. He has responded this past week to my emails. My bloodwork cam in and I had a level 200 for strep. I sent on azithromycin myself.

 

I was on the tic forum for 3 years before figuring out he was pandas. I feel like I am burnt from over thinking and over doing. I am starting to wear down a bit. Below is the letter I wrote to dr. Trif.

 

 

Nicholas went off of azithromycin on Wed morning after 32 days on it. He was for all intensive purposes tic free. Behavior and sleep perfect. I was planning on doing the pulse therapy wed and sunday. By Friday he was ticcing again in his neck and eyes. It made me so sad to make eye contact with him , I know he was confused why the tics were back, he was so happy they were gone.... On saturday night I gave him a night dose and sunday morning and night. I don't know what my plan should be right now. Was the pulse therapy good for us to use if he was able to maintain being tic free and not symptomatic? I don't know what to do. I also wanted to ask you opinion on my bloodwork and Roberts bloodwork. Dr Chung started me on azithromycin. Got the script from Dr. Chung. .

 

 

I think nick is out of the azithromycin refill to his script also.

 

If I didn't think antibiotics were bad for nick, in other words if this "pink" medicine were anything else other than medicine I would have him on it every day and night because this medicine gave my child back to me. Tic free, happy, cooperative, non emotional, cooperative and sleeping like a baby.

 

I don't want to feel guilty about keeping him on antibiotics since I know he does have an infection, if he did't then why did it dramatically change him so much??

 

Is it just that he needs to be on it longer or is it that he is never going to get better since I waited so long to use antibiotics.

 

I am planning on looking into homeopathic remedies aggressively for Nick so I can try to get him better without the use of medicine.

 

My father, who is 91 has been very ill lately and it is hard for me not to know what I am doing with Nicholas since I have the stress of an ill parent and child.

 

Your thoughts and direction in the upcoming months would be greatly appreciated

 

Thanks

 

abbe

[eljomom]

Hi abbe-

I know how you are feeling, but the abx never dramatically improved my dd's tics. I hope you will get answers from Dr. T, and that you will post his response. I can completely relate to the question you asked: " is it that he is never going to get better since I waited so long to use antibiotics." I still ask that every day of my life.

[Dedee]

I don't know Dr. T. We have never used him. I have heard wonderful things. But it sounds like you are looking for someone to help you feel better about giving your child "medicine", specifically antibiotics. So I will give you my opinion, hopefully not to offend in any way.......Your child's brain is under attack. It is affecting his quality of life and the quality of your family life. I suspect you realize (or you wouldn't be here asking), that your child does indeed need the antibiotics. His response was positive, as you said, giving you your little boy back. No one likes the idea of giving their kids a bunch of unnecessary medication or supplements. But, unnecessary is the key word here. If your child is PANS and does respond positively on antibiotics then the medication is very necessary. I think for some reason some people view taking medication as a "weakness". They love to display the fact that they NEVER give their kids medications or take it themselves. Well, great for them. I suspect they don't live in the same situation that most of us do. Personally, I have nothing to prove in that regard. All I want is to keep my child functioning at his / her highest potential and for them to be happy. If that means antibiotics and a few supplements for a few years, then so be it.

 

Most of the PANS / PANDAS specialist are very busy. IF you are ready and accepting of treatment when you go then I imagine you will get exactly what you need from Dr. T. Only you can decide in your heart what you think your family is ready for based on your personal experience. You are his Mother and therefore the best to judge what your son needs. I'm sure you will make the right decision what ever it may be. Best of luck.

 

Dedee

Edited March 26, 2012 by Dedee

[WorriedDADNMOM]

Abbe, I don't know your exact situation, But I want to encourage you. My Dd has been on abx(azith) for 3-4 month now. She is also on a host of supplements. No milk.

 

We kinda caught this halfway early we think. Not sure if it started at 5 or 6 but by 6.5 y/o our dd became a mess with severe emotional lability, tics, dark thoughts, the whole gamut. Subsequent infections lead to mutism for periods of time, neuro tremors of head, tics and other chorea like movements. Our Integrative ped has talked with Dr T on some of his other cases. I am sure he can and will help you but this needs to be a complete overview of your child and the issues regarding your ds. Vitamin deficiencies etc......... Have you considered a DAN or Integrative Ped????

 

Best of luck to you and Keep up the fight!!!!!

[abbe]

Thanks all

 

the morning light brought a much better frame of mind for me. I already see an improvement again with Nick putting him back on the azithromycin. Just 4 doses later. You are right I am his mother and I need to do whatever I can to make him feel better at all times. I am keeping him on for the time being.. I will manage and then cure my son and nothing will stop me or my efforts. Just a little burnt out since my father has taken ill . As always this forum has been a shoulder for me to lean on.

 

 

abbe