New Symptoms

[ange]

I am so distraught - until now my son's main issues were the rages which have become much more manageable while on zithro for the past 6 months. Living with him is very challenging, but I felt lucky compared to a lot of people here whose kids seem much more debilitated.

 

Just recently I noticed something new which I now see is an established tic. He does neck stretch and shoulder shrug now. It is heartbreaking for me to watch him. I also detect something different in his speech pattern. It seems like there is a little blip in his speech, almost like a momentary pause, and then he continues but backtracks one or two words. It sounds almost like a little stutter. Unless you are looking out for it you won't really notice it, but to me it's plain as day.

 

I am so sad - why is this happening while on zithro. I do know he had a could earlier this month, and my daughter had an ear infection, but stil - he had not shown a real tic before (he had a persistent cough but that just seemed more normal than a head/shoulder thing.)

 

I just feel so lost.

[lismom]

I feel your pain. When another symptom is added it adds to your stress. Tics can be hard to watch. Believe me I know. We've been through a bunch. What dose and how much does your son weigh. We ended switching from zithromax after being on it for a year and a half. But we are also looking into Lyme right now. It could be the dose, a reaction to illness around or your in need of combo abx.

[Fixit]

just wanted to let you know a mom of ticcers it is so heartbreaking....

But, you are here, so that means you will figure this out though the road may be long..

[ange]

I feel your pain. When another symptom is added it adds to your stress. Tics can be hard to watch. Believe me I know. We've been through a bunch. What dose and how much does your son weigh. We ended switching from zithromax after being on it for a year and a half. But we are also looking into Lyme right now. It could be the dose, a reaction to illness around or your in need of combo abx.

 

Thank you both for your empathy. It is really hard to watch, especially when I mentioned it to my husband and mother and they had a hard time noticing it at the outset - I kept saying, "just watch him".

He is about 46 lbs and is on 250 mg zithro a day (a.m.). Takes 1 culturelle probiotic (p.m.) and 500 mg omega 3, and melatonin at times to help him fall asleep.

 

The zithromax really helped cut out the rages, but his moodiness has still lingered and I feel like we are not going to see much more progres on it. My doctor was away, but I will speak to her tomorrow a.m. to see what the next steps are.

Thanks!

[swim]

Every new symptom is like another weight on your shoulders ... I am sorry you are in this situation ... you are not alone. Our son tics and we had a huge increase the last few weeks that included vocal tics for the first time (also the voice change thing which was heartbreaking to listen to) - we have been dealing with PANDAS/PITAND for 8 years. We didn't know what to do. He was on keflex, so we increased it with no improvement. We tried amox with no improvement. We tried clindamycin because he had a great 4 months after having it before T&A last year. Well, that made his tics the worst we have seen. He was not sick, no one in our house was sick, there was no reason for the increase. We were lost and our doc didn't have any ideas other than to see a neurologist again.

 

So, we guessed maybe yeast was an issue (we delt with a big systemic candida and leaky gut problem about 6 years ago). We stopped all antibiotics/supplements and basically moved to the caveman diet (mostly just meat, veg, nuts, seeds - I know it's hard). We added candex (2 to 4 capsuls a day depending on how things were going) and probiotics at 50 to 100 billion per day. We had one night where he was crying uncontrollably for no reason for about an hour - he didn't know why - was this a dye off reaction? Maybe. We have seen tics decrease about 80 to 90%. Was yeast a trigger for the increase - not sure, but I hear candida can cause neurological symptoms.

 

We have also started up with a naturopath that seems willing to look into everything. We are running lyme, myco p, bartonella, celiac, thyroid, thyroid antibody, candida, inflamation indicators and basic blood tests. Waiting for results in the next 2 to 3 weeks.

 

So, for us, attempting to treat a possible yeast problem helped to decrease the tics while we are waiting to get other test results. Maybe something I said will help - hoping you find some relief ...

[swim]

One more thought on the rages. I don't know if the rages we saw in the past with our son were due to PANDAS/PITAND or candida. His rages happened about 7 years ago when he was 5. We were treating him for systemic candida and leaky gut. It was like clockwork. We would give him the supplement to kill the yeast (garlic, other natural supplements that we rotated) and he would be like an angry teenager 30 minutes to an hour later. Each rage would last about the same amount of time (maybe 45 minutes or so). If he didn't have the supplements for the yeast - no rage. When the yeast got better - no rages. For us, it seemed we correlated his rages to dye off reactions. I don't think this is the case for many people dealing with the rages, but for our situation we are guessing dye off reactions seemed to cause past rages.

[airial95]

ange,

 

I can realte to your worries. My son started with just rages (primarliy OCD related) and after about 5 months on azith he started with a tic as well. It was mild at first, but it grew worse and worse.

 

For us, it started at the same time as an active strep infection (yes - he caught strep even on the azith!) So if your son had been sick recently, I would take him to get tested, just to be safe.

 

I know how horrible it can be to think that you eluded that particular symptom only to have it show up after months of slow but steady improvement. Two new tics just cropped up on us this past weekend that we're keeping an eye on...it's never fun.

 

Good luck!

[butterflymom]

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Edited February 3, 2016 by butterflymom

[ange]

Thank you all for your responses. Just knowing that others are in the same boat and somehow muddle through really helped me today. When ds came home from school I was able to be more patient and loving and the anxiety I was feeling watching him the past few days as these new symptoms appeared seemed to be able to be pushed aside to allow me to be able to interact more happily with him.

 

Interestingly, he seemed pretty happy mood-wise, which is always a nice surprise - I would have thought the rages would spike if he was showing new symptoms (although since we had some of the germs in the house this past month his moods have fluctuated more negatively, but never back to the rages).

 

Will keep you posted on what the doctor says.