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At wits end - time for meds? Help


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My dd is 9 and has motor and vocal tics for almost 5 years now. I have been posting on the pandas forum a lot but decided that this forum would be beneficial for this particular question. I am not sure if my dd has pandas or lyme or mycoplasma or what. I have tried endless alternative therapies, diet eliminations, supplements, homeopathy, accupressure, applied kinesiology, muscle testing for allergies, food allergy testing (all neg), going organic, keeping a clean diet, clean house, non toxic everything...need I go on? Anyway, we are currently trying zithromax for the possibility of strep induced pandas. She had a positive strep test 4 yrs ago, was treated, then tics came out 7 months later so hard to tell. Neg aso titer at that time too.

 

My dd's tics are off the charts now. Is it because school started 4 weeks ago, is it because she is getting at the "peak age for symptoms" as our pediatrician has said? I do not know but feel like she can not go another minute like this in public. I am wanting to call the neuro and find some meds. Is this a bad idea? Please tell me. I have heard that the catapres patch does not have many side effects.

 

I would appreciate ANY advice on what works and what to stay away from. I am scared to death and want to make the right decision. I really need some help..

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Hi keeptrying,

 

I understand the desperation, and plaese do not feel bad if medication is the route you all must do at this point. I believe God works through medication too.

 

I too was at the point of medication for my son when he was 12yo. He exploded with screaming every second of the day. We started out with the patch and notice it really helped with the motor tics, but did not do anything for the vocal tics. He was on it for a month and we took him off because he was so out-of-it and his eyes looked sad. Since our main issue was the vocals it did not seem to be the right thing for him. We waited about a year trying diet and testing allergies...ect. When he was 13yo we had to try something else I could not function after a year of the screaming, so the neuro said risperdal would help about 50% of the vocals. It worked more like 75% for him and he did not have side effects while on it other then being tired. I think the weight gain is the one that effects girls more on risperdal. He did however have bad withdrawls with it when we weaned him off. Dizzy spells for about 5 weeks.

 

Medication for us was more to settle things down so we could refocus and see what else we wanted to try, or keep me motivated to keep up with the natural stuff. It was too hard to think when I could not pick myself up off the bathroom floor every morning.

Good luck,

cp

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Hi keeptrying,

 

I understand the desperation, and plaese do not feel bad if medication is the route you all must do at this point. I believe God works through medication too.

 

I too was at the point of medication for my son when he was 12yo. He exploded with screaming every second of the day. We started out with the patch and notice it really helped with the motor tics, but did not do anything for the vocal tics. He was on it for a month and we took him off because he was so out-of-it and his eyes looked sad. Since our main issue was the vocals it did not seem to be the right thing for him. We waited about a year trying diet and testing allergies...ect. When he was 13yo we had to try something else I could not function after a year of the screaming, so the neuro said risperdal would help about 50% of the vocals. It worked more like 75% for him and he did not have side effects while on it other then being tired. I think the weight gain is the one that effects girls more on risperdal. He did however have bad withdrawls with it when we weaned him off. Dizzy spells for about 5 weeks.

 

Medication for us was more to settle things down so we could refocus and see what else we wanted to try, or keep me motivated to keep up with the natural stuff. It was too hard to think when I could not pick myself up off the bathroom floor every morning.

Good luck,

cp

 

I have been there - literally on the bathroom floor begging for God to help. Thank you for your information. Can you tell me how long it took for you to notice the change in motor tics when starting the patch? Are you med free now? Was it just to help through the hard times?

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I always hesitate to respond on such a question because of the horrid experiences my son had with *all* of the meds he tried. So I realize full well I am biased

 

I realize he may be an extreme case, but all I would suggest is great caution, remembering this is a developing brain and body and that some of the meds can have very long lasting side effects and are also horrid to wean off from

 

my son was just 10 when he started exhibiting very severe tics, along with OCD. But looking back, none of his symptoms were a fraction of what the meds put him through.

 

I agree with CP that meds have their place and I know for some people they are literal and figurative life savers.

 

so all I urge is just be very cautious as what you may get on a med could be a lot worse than what you are experiencing without it! Bitter experience talking :(

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I always hesitate to respond on such a question because of the horrid experiences my son had with *all* of the meds he tried. So I realize full well I am biased

 

I realize he may be an extreme case, but all I would suggest is great caution, remembering this is a developing brain and body and that some of the meds can have very long lasting side effects and are also horrid to wean off from

 

my son was just 10 when he started exhibiting very severe tics, along with OCD. But looking back, none of his symptoms were a fraction of what the meds put him through.

 

I agree with CP that meds have their place and I know for some people they are literal and figurative life savers.

 

so all I urge is just be very cautious as what you may get on a med could be a lot worse than what you are experiencing without it! Bitter experience talking :(

Thank you so much for your honesty. I know everyone has their own experience. I would not have asked the question if I was not willing to hear the good and the bad. I am sorry your son had such an experience. I am on the fence still

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I understand exactly how you feel. We were determined to not medicate our ds also. When he went into 5th grade, when all the schools combined the kids, he had alot of new faces to deal with and that is when the picking started. He was ticcing for the earlier years but the kids just new=ver even commented on it...he was a well liked boy. Well after reading on here and some good results from topamax and a recommendation from our ped doctor we did it. We started him on 25 mg of sprinkle caps for about 2 weeks and then went up to 50 mg. Within about 4-6 weeks they were pretty much gone...no one could notice anything. He had ALOT of motor and just a small vocal here and there. He is now on 25 mg and doing great with no side effects. We did notice the past two summers them starting but I am convinced it is the chlorine he swims in. He will not be swimming at the beginning of next summer to see if they start. Just be sure to start slow if you use this. HTH

Mary

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We also have been considering this route lately. We have been through almost all treatments including 2 IVIG's, high dose antibiotics, allergy treatment, food elimination, supplements, allergy elimination, vitamin testing. My head hurts just thinking about it. At what age do the tics slow down? We seem to be at the height, but my son is 2 months away from 12. I thought we would be on the downward slope by now! We have been checking into Topamax. Does it have to be sprinkle cap? Has anyone had pill form and done well?

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Yes, medication was just to get us through the hard times. After he stopped screaming we felt the loud vocals were hard but had to remember what it was like with the screaming. He will be 17yo next month and the vocals are there but much much quieter. He stopped the motor tics the first 24 hours on the patch.

 

It is so hard to decide to medicate, but if the health of mom and dad are being affected and we are the ones who need to be strong and there for our kids then do what you need to do to heal the family. Everything else will be taken care of, I promise, God knows your suffering. If medication is worse for your child you will be convicted that no medication is right for your child.

 

The one thing I did was to make sure I kept him on a very healthy diet while on the medication, I guess that just made me feel better and I hoped and prayed keeping him healthy would help keep any bad side effects away.

 

Keeptrying, keep praying... He's listening.

 

God Bless,

CP

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It is has been real hard since May. I believe he is PANDAS, but I dont know what else to do at this point. My heart is breaking. I feel so bad for him. He just came in an hour ago from playing outside and said he got in a fight with one of his friends for calling him twitch. His tics have been bad for the last five months. We did a steroid burst, have been on Saving Sammy dose of Augmentin, and did IVIG. He deserves some peace and I am praying for that to happen. It has been a long 3.5 years. We have yet to try medication, but I am hoping with all my heart that it can give us a break. I dont know what else to do.....

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It is has been real hard since May. I believe he is PANDAS, but I dont know what else to do at this point. My heart is breaking. I feel so bad for him. He just came in an hour ago from playing outside and said he got in a fight with one of his friends for calling him twitch. His tics have been bad for the last five months. We did a steroid burst, have been on Saving Sammy dose of Augmentin, and did IVIG. He deserves some peace and I am praying for that to happen. It has been a long 3.5 years. We have yet to try medication, but I am hoping with all my heart that it can give us a break. I dont know what else to do.....

I am so sorry to hear about your son's struggles. My heart breaks daily too. I too feel bad for my dd. I fear that as she gets older she will become increasingly aware of her looks - we have all been there- and start to feel bad about herself. Right now, she does not care and is happy and plays without worrying about a thing. Her friends have not said anything but they are still young. Soon, that could change. We are just starting down the road of treatments and it is really scary. Her tics have been VERY HIGH since May. She has never had such a long stretch like this before. I understand you have been at this for 3.5 yrs, if you do go to meds, feel great about how hard you have fought for your son. Just because, you/we go to meds for help does not mean we are giving up. We are only doing what we feel is best for our child. I never thought I would really consider medication but I am. It makes me sad that we might have to but what is the alternative? Not good either. I will keep you in my thoughts and hope your son thrives med free or not.

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keeptrying

when did she have the steroid burst? before or after the increase in tics last May?

I assume the steroid burst was to help with the PANDAS symptoms or was it one of those "trial" bursts that concern me so?ie were the steroids given to try to dx the PANDAS?

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I had DS14 on a month of Zithromycin and his tics were substantially worse. He switched to Omnicef and tics backed off (not miracle cure gone, mind you, but back to baseline.) Prior to that, he was on Augmenticn, which didn't help but didn't set off tics either. So maybe try switching abx for starters?

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I had DS14 on a month of Zithromycin and his tics were substantially worse. He switched to Omnicef and tics backed off (not miracle cure gone, mind you, but back to baseline.) Prior to that, he was on Augmenticn, which didn't help but didn't set off tics either. So maybe try switching abx for starters?

 

thanks for this. how soon after the switch to omnicef did you notice a slow down in tics?

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