New and lots of questions

[Topaz1968]

I have been on a roller coaster ride as I am sure many of you have been. My son is now 9 and was originally diagnosed with TS last year, however, I was never convinced that it was Tourettes. He never had really bad tics, but did have some for over a year. He had blood work done and my pediatrician did put him on antibiotic for I think it was 2 weeks based on the high Strep titer.

 

Anyway, he had ups and downs with tics, but recently showed a sudden onset of OCD symptoms - mostly intrusive thoughts and fears about weather, bees, knives and a few other things.

 

He was not sick that I noticed, and these symptoms were rather sudden.

 

Anyway, I took him to see Dr. B in CT (which is where I live). He does believe it is Pandas based on symptoms and previous blood work. He has started taking an oral antibiotic for 30 days - just started yesterday. I will also be taking him for more blood work (we will see how he handles that).

 

We did discuss IVIG treatment if the antibiotics don't work. I am really concerned about this treatment reading about the side effects, etc. I am nervous that it may not work and should I put my son through it if it is only a chance of it working. I am torn. He is also on Tenex, just started that after our last visit to the Neurologist and telling him about the bad thoughts. I was also against meds, but decided to give it a try. Then, I started to do more research about Pandas and found the doctor here locally so I thought it would not hurt to talk to him.

 

He did tell me that at my son's age, the antibiotics may not work. My son knows he is on the Tenex for the bad thoughts, etc. But I told him the antibiotics were to get rid of an infection in his body. I don't want to keep filling his head with all of this, as I think it may make things worse in his head. I feel like the less I bring it up, the better. I let him tell me anything and always support him 100% by telling him it is OK to tell me his thoughts and he will be OK. We will get through this.

 

Here is the kicker. My husband is an alcoholic and does not think anything is wrong with my son. He is very difficult to talk to and I have not discussed any of this with him. I am working on myself and my son and seeing a therapist myself. My husband knows very little as I have always handled things with school and doctors. I know this is a whole other story, but had to throw this in because if my son has to go for the IVIG treatment, I know my husband will not be on board with it. I will be talking to my therapist to see how I can handle this with him. Basically, I am acting as a single parent in all of this.

 

Sorry for the long post and thanks for listening.

 

Any advice would be greatly appreciated, also maybe with helping my son with his intrusive thoughts. I am trying to do some research on CBT and EBT so I can help him any way I can.

 

Thanks

 

Rachel

[Fixit]

I have been on a roller coaster ride as I am sure many of you have been. My son is now 9 and was originally diagnosed with TS last year, however, I was never convinced that it was Tourettes. He never had really bad tics, but did have some for over a year. He had blood work done and my pediatrician did put him on antibiotic for I think it was 2 weeks based on the high Strep titer.

 

Anyway, he had ups and downs with tics, but recently showed a sudden onset of OCD symptoms - mostly intrusive thoughts and fears about weather, bees, knives and a few other things.

 

He was not sick that I noticed, and these symptoms were rather sudden.

 

Anyway, I took him to see Dr. B in CT (which is where I live). He does believe it is Pandas based on symptoms and previous blood work. He has started taking an oral antibiotic for 30 days - just started yesterday. I will also be taking him for more blood work (we will see how he handles that).

 

We did discuss IVIG treatment if the antibiotics don't work. I am really concerned about this treatment reading about the side effects, etc. I am nervous that it may not work and should I put my son through it if it is only a chance of it working. I am torn. He is also on Tenex, just started that after our last visit to the Neurologist and telling him about the bad thoughts. I was also against meds, but decided to give it a try. Then, I started to do more research about Pandas and found the doctor here locally so I thought it would not hurt to talk to him.

 

He did tell me that at my son's age, the antibiotics may not work. My son knows he is on the Tenex for the bad thoughts, etc. But I told him the antibiotics were to get rid of an infection in his body. I don't want to keep filling his head with all of this, as I think it may make things worse in his head. I feel like the less I bring it up, the better. I let him tell me anything and always support him 100% by telling him it is OK to tell me his thoughts and he will be OK. We will get through this.

 

Here is the kicker. My husband is an alcoholic and does not think anything is wrong with my son. He is very difficult to talk to and I have not discussed any of this with him. I am working on myself and my son and seeing a therapist myself. My husband knows very little as I have always handled things with school and doctors. I know this is a whole other story, but had to throw this in because if my son has to go for the IVIG treatment, I know my husband will not be on board with it. I will be talking to my therapist to see how I can handle this with him. Basically, I am acting as a single parent in all of this.

 

Sorry for the long post and thanks for listening.

 

Any advice would be greatly appreciated, also maybe with helping my son with his intrusive thoughts. I am trying to do some research on CBT and EBT so I can help him any way I can.

 

Thanks

 

Rachel

 

Rachel..so sorry you are here...it is a hard road, but this is a great group of parents...

 

JMHO Don't worry about ivig yet..keep it in mind..but give the abx a little time....you may have to switch abx etc..i am sure parent wiil come in with some other good thoughts..

 

my ds on set was 1 1/2 years ago and he is 10 1/2... when doc k mentioned ivig in jan 2010 i couldn't get it in my head.(i still haven't done a big gun, but may soon)... and as you understand more and try things, something might click, or work..

 

And even my loving(somewhat concerned(about ds)) husband can be....well, we'll let it go for now..

[thereishope]

Welcome to our forum.

 

What antibiotic is your son on? As for how long it takes to see improvement, it really does vary child to child

 

Taken from the PANDAS FAQ

http://www.latitudes.org/forums/index.php?showtopic=6266

 

Q: How long after starting antibiotics should I expect a response?

A: In severe exacerbations, some parents have reported a response within 24 hours. However, more parents have reported significant improvement 10-12 days post initiation of antibiotics. Anecdotal evidence indicates that exacerbations can last for many weeks (often 4-6 weeks). Parents with children on prophylactic antibiotics seem to report that subsequent exacerbations do occur but are less severe than without antibiotics.

 

 

A lot of PANDAS kids do not get symptoms of being sick with strep, yet have it. So don't let the lack of hurting or lack of a fever cause any doubt. Has Dr B discussed whether you should have your son take the Cunningham blood test? If you haven't done so already, also rule out strep in family members. As for your husband, he's probably in denial or simply blinded by the fact that your son is suffering. I don't have real advice on that. Since he has his own demons and if he is not ready to tackle his own problem, I don't know what to suggest to get him on board. But I applaud you more than you know for stepping up and getting the job done on your own! I sure hope you take a moment and realize that you are an EXCELLENT mother.

Edited August 18, 2010 by Vickie

[KaraM]

HI Rachel,

 

I agree with the previous post. Just keep the IVIG in the back of your mind for now and be patient with the antibiotics. While you may see some imrpovement right away it may take a few weeks. At 7yrs, 10 months, my daughter started on a 14 day dose of Omnicef and didn't start improving until day 11. About a month and half later, she started on Zithromax and we saw some improvements very quickly - within a few days. Within a month she was probably about 70% - 80% better. She is still on Zithromax (since the end of March) and is about 95%. We also see Dr. B.

 

One day at a time...

 

Kara

[EAMom]

Welcome Rachel,

 

I'm so glad you made your way to Dr. B. Hang in there!

Edited August 19, 2010 by EAMom

[matis_mom]

Hi Rachel,

I am sorry you are going through such a rough time on your own! You've got to do what you've got to do, and I see you are doing it, and doing it well!

I did not see in your post what your son's age is, it'd be interesting to know. My son is 12 and also has the intrusive thoughts, and they are so hard to deal with! One thing I have found helped him greatly was to write things down. He wanted to share with me but was physically unable to get the words out no matter how hard he tried, but he had no problem at all putting it down on paper. He felt a lot more relaxed after he was done, and I was able to get a glimpse of what was going on in there. Scary

Anyway, I would say give the antibiotics some time. Trust Dr. B. He has treated so many kids, he knows what he is doing. Don't worry about the logistics of getting your son through IVIG yet, you'll figure it out. You can always just say "he has an immune problem" which indeed he does, and that's that.

About sharing the ins and outs of treatment with your son, it is a personal decision, buy it has helped my son greatly to know what is going on. To know he is not going crazy, to know there is an actual physical cause for this, to know treatment is available, to know it is NOT HIS FAULT.

He also has urinary problems when he is going through an exacerbation, and this can be embarrasing and frustrating, but just knowing he actually cannot control it reduces the stress level for both him and I. Now we've just come to accept it and doing what we can to make it less incovenient.

It is also important for them to understand how important it is to take those antibiotics and do whatever else Dr. B might prescribe. DS has been a real trooper, he so badly want to get well!

Keep us posted and keep coming here for advice and support.

 

Isabel

[Topaz1968]

Thanks to everyone for their words of advice and support. My son is 9 - forgot to mention that. I will definitely give the Antibiotics a chance to work - this is only the 3rd day. I think I will probably get him off the Tenex when we go back to the Neurologist in Sept. I don't think that is working at all and causes him to be tired. With school starting in a couple of weeks, that is the last thing we need.

 

I am glad to hear that a lot of people have success with the oral meds alone. I hope that is the case with my son. I think his personality change is what scares me, and him, the most.

 

We talk about it and how it is not him, I try to separate it from his "good" self. He calls the bad guy - Devil J. I told him that when Devil J bothers him, to tell him to go away.

 

He feels bad that he snaps at me and I try hard not to get angry because I know it is not "him". I think one of his fears is making me angry. He was never the type of kid to get into trouble because it hurts him so much when someone is angry at him. I also think that is why one of his most frequent "intrusive thought" is hurting the little girl that lives a few houses down. She has a way of pushing his buttons and also hit him once with a plastic bat. He does not forget and this bothers him a lot - one of his thoughts is about strangling her. As much as it scares me and him, I tell him that we both know he would never hurt anyone. He is scared that he will.

 

Anyway, thanks once again for the support, I will keep everyone posted.

 

Oh, and he is on Augmentin for 30 days - he hates it

[matis_mom]

Thanks to everyone for their words of advice and support. My son is 9 - forgot to mention that. I will definitely give the Antibiotics a chance to work - this is only the 3rd day. I think I will probably get him off the Tenex when we go back to the Neurologist in Sept. I don't think that is working at all and causes him to be tired. With school starting in a couple of weeks, that is the last thing we need.

 

I am glad to hear that a lot of people have success with the oral meds alone. I hope that is the case with my son. I think his personality change is what scares me, and him, the most.

 

We talk about it and how it is not him, I try to separate it from his "good" self. He calls the bad guy - Devil J. I told him that when Devil J bothers him, to tell him to go away.

 

He feels bad that he snaps at me and I try hard not to get angry because I know it is not "him". I think one of his fears is making me angry. He was never the type of kid to get into trouble because it hurts him so much when someone is angry at him. I also think that is why one of his most frequent "intrusive thought" is hurting the little girl that lives a few houses down. She has a way of pushing his buttons and also hit him once with a plastic bat. He does not forget and this bothers him a lot - one of his thoughts is about strangling her. As much as it scares me and him, I tell him that we both know he would never hurt anyone. He is scared that he will.

 

Anyway, thanks once again for the support, I will keep everyone posted.

 

Oh, and he is on Augmentin for 30 days - he hates it

Oh, I totally know what you are going through. You are doing a good job at supporting him and separating things. Keep reasuring him as much as you can, as stress and guilt will only play against you, but of course set limits as you see appropriate.

Augmentin has worked well for us, hope it helps him.

[thereishope]

Tell him that he isn't the only child that has intrusive thoughts about hurting someone else. Even though my son did not have this, I have read it a few times. He may be comforted to know he isn't the only one who has thoughts like that.

 

And the naming of the OCD is perfect! That's what they do with CBT. Good for him!

 

 

Thanks to everyone for their words of advice and support. My son is 9 - forgot to mention that. I will definitely give the Antibiotics a chance to work - this is only the 3rd day. I think I will probably get him off the Tenex when we go back to the Neurologist in Sept. I don't think that is working at all and causes him to be tired. With school starting in a couple of weeks, that is the last thing we need.

 

I am glad to hear that a lot of people have success with the oral meds alone. I hope that is the case with my son. I think his personality change is what scares me, and him, the most.

 

We talk about it and how it is not him, I try to separate it from his "good" self. He calls the bad guy - Devil J. I told him that when Devil J bothers him, to tell him to go away.

 

He feels bad that he snaps at me and I try hard not to get angry because I know it is not "him". I think one of his fears is making me angry. He was never the type of kid to get into trouble because it hurts him so much when someone is angry at him. I also think that is why one of his most frequent "intrusive thought" is hurting the little girl that lives a few houses down. She has a way of pushing his buttons and also hit him once with a plastic bat. He does not forget and this bothers him a lot - one of his thoughts is about strangling her. As much as it scares me and him, I tell him that we both know he would never hurt anyone. He is scared that he will.

 

Anyway, thanks once again for the support, I will keep everyone posted.

 

Oh, and he is on Augmentin for 30 days - he hates it