Need opinions and assistance

[Dedee]

Well, I hate it that I even have to come here, but I suppose denial won't fix anything. I know this is not the ocd forum, but I also know that many of you (like me) are dealing with ocd and tics. For those who do not know my backgroud, I have a son who is PANDAS, but now doing very well after years of searching and finally getting the right treatment. So now my second son has me very concerned. He has always had ocd tendencies and he is a very soft hearted, emotional child. In the past though he hasn't gotten bad enough with his symptoms that I felt like he needed intervention. It seemed to come and go very gradually, not at all explosive like my PANDAS son. Unfortunately, he seems to be getting worse over the last few months. It just happens so gradual that you just sort of wake up one morning and say gosh I think this is out of hand. The only thing he is doing now is constantly requesting reassurance and he appologizes constantly for really silly things. He probably asks me 10-15 times a day "is everything alright mom?" If I don't answer just right or seem in the least bit tired or irritated he will ask more and more. I have tried talking with him and asking him what he thinks might not be "alright" or if he is worried about something. He just shrugs and says no I just want to know if everything is ok.

 

We took our PANDAS son to see Dr. Murphy in Florida (about 8 hours from home) almost 2 years ago for a treatment plan. We did have some discussion with her then about our second son and his potential. She said he very likely could develop more ocd behavior as he got older and had more strep exposure. She said that some kids will have a very gradual onset from frequent strep exposure until it finally becomes full blown ocd. He has sort of done that except that his seems to progress then receed and come back again. The problem is that this time it doesn't seem to be going away. It has been going on for around 6 months now. He also has trouble sleeping and comes to sleep with me most nights. He always has strep several times a year, always during the school year. I have thought of removing his tonsils, but not real serously. He would FREAK if he thought that was coming. He faints if one of my other kids gets a scrape.

 

So I guess I need opinions as to wheather or not you guys feel that this is significant enough to seek medical assistance? Also, I think I heard that Dr. Murphy is no longer at Shands Clinic. How in the world will I find her now?

 

As a side note, my son has been on inositol for over a year and I started 5-htp about 2 weeks ago. I haven't seen a bit of change in anything yet. He also takes fish oil, magnesium taurinate, and a multi-vitamin.

 

I appreciate any opinions / suggestions. Thank goodness we have this board to turn to in times of turmoil.

 

Dedee

[Pudgeo]

Hi Dedee, I just wanted to comment that somewhere in this forum someone listed Dr Murphys new phone #..

Also I was giving my son supps like 5-HTP, inositol, NAC, co-q-10 and they made him worse! I actually cut them all out and he is doing better on just Kirkman spectrum complete, omega3 , adrenal cortex, and I am trying a product by VRP called epicor which is an immune modulator. So I guess what I am trying to say is I thought the 5-htp etc had to help and it ended up making him worse so I guess keep an open mind...

Have you ever done any long term anti-biotics? We did a month of azithromycin and I think it definitely helped but I am not sure if I want to put him on it again...

I would say my son still has OCD/anxiety (we use ativan) but his memory & retention are finally coming back a little.

Have you ever thought of doing any talk therapy with your son so he is not worried so much?

I know it is frustrating because every kid is different and what works for one will not be the same for another!!

Sarah

[P_Mom]

Dedee,

 

Sorry to hear about the concern with your younger son...I know all to well how it feels to to have two sons with issues. I do think that the symptoms warrant concern, though, particularly because of your older sons PANDAS, as it is thought to be genetic. My younger son was very much like you described, asking questions over and over, constantly seeking reassurance, the sleeping issues, etc. (he is PANDAS)

As far as suggestions as where to go from here.......have you thought about getting his titers ran because he gets strep several times a year? That senario may lead to an increasing rise in titers with each strep because his titers may not have had time to return to normal before the next strep..hence the gradual increase of symptoms. Just a thought.... Do keep in mind titers aren't conclusive of PANDAS though! I know you know that!

 

Also, what about giving him a round of antibiotics to see if it helps? Steroid burst, perhaps?

 

Well, that is all I got....those are the steps I'd take at this point if I were in your shoes.

 

Hopefully, it is nothing but a childhood phase!! Let us know what you decide to do.

 

Take care,

 

Kelly

[Dedee]

Actually Kelly, I think that is a great idea. I was thinking of having a culture done to make sure it was gone but I like the idea of titers better. I would love to get some antibiotics but I'm not sure at this point if I can talk my pediatrician into it. I have an appointment to have a parent / doctor consultation (without my son), next week. I will get a feel then if she thinks I'm nuts or believes in the family link. She isn't very up on PANDAS, but did agree to give me the ongoing antibiotics based on a treatment plan sent to her by Dr. Murphy for my oldest son. You all know how it is, they are either with you or think your some kind of crazed mother making up illnesses for your kids. Whew, that gets so old after a while.

 

Sarah, I have actually been thinking of stoping most everything except the fish oil, but I wanted to give the 5-HTP enough time to work if it's going to before I do anything drastic. He has been on fish oil for years so I know we are good with that. It seems that anytime I try to talk to my son about what is going on he just gets extremely upset and cries and is so apologetic for his behavior. It will just break your heart. He really doesn't seem to understand his actions or be able to articulate his feelings. So I am so hesitant to bring it up to him anymore. I'm just not sure what is right or wrong anymore. It is so frustrating. Of course I only want to do what is best for my precious child, but at this point I am not sure what that is. I am so hesitant to use medication. I mean, it worked well for my first child and heavens knows we probably could not have gotten through that first acute phase without it. But it has been a long road to wean him off and I'm not sure I want to get on that horse again. I guess it is day by day till our appointment next week. Thanks for your help!

 

Dedee

[Dedee]

OK, now the weirdest thing has happened. I go home on Friday to tell my husband that I want to count how many times my son asks me if everything is alright. I wanted to have a number to be able to take to the doctor tomorrow so I could say he asks 12 times a day or whatever. So we agree we will tally up and write it down for reference. Of course, what happens? Nothing, not all day Saturday or Sunday....NOTHING. He doesn't ask a single time. Seems just fine. What in the world is going on here? I don't know if he is getting better because of the 5-HTP that I started him on a week ago or is this his normal cycling thing or what. I am so confused!! He does still tell me frequently "I love you mom". But what he is really doing is waiting to see how I will respond, what the tone of my voice is, etc. I know it sounds crazy, but if I don't answer in the right tone ( or whatever), he says it again in just a few minutes. But even that is only about 5 times a day, nothing like he was doing when he would ask for reassurance. He still does the frequent urination thing, no change there. So, heck, now I don't know what to do about the doctor's appointment tomorrow. She is going to think I am nuts if I go in and say, well he was doing this but now he isn't. Uggg, I think I am going nuts. What to do....What to do.....

 

Dedee

[EAMom]

Pudgeo,

for what it's worth, dd's been on 250mg/day Azithromycin since June (PANDAS remission). We were on other antibiotics before that (end of March-June). We were on Augmentin 10 days (helped somewhat), Amoxicillin many weeks, prophalactically (didn't help), and a cephalosporin 10 days (didn't help), back to Amoxicillin.

[Chemar]

Also, I think I heard that Dr. Murphy is no longer at Shands Clinic. How in the world will I find her now?

 

 

Dedee

 

((((Dedee)))) so sorry for your new concerns

 

Dr Murphy is now at University of South Florida (Tampa-St Petersburg area) and the phone # is 1-727-767-8291

 

hope that helps

[ilovedogs]

Actually Kelly, I think that is a great idea. I was thinking of having a culture done to make sure it was gone but I like the idea of titers better. I would love to get some antibiotics but I'm not sure at this point if I can talk my pediatrician into it. I have an appointment to have a parent / doctor consultation (without my son), next week. I will get a feel then if she thinks I'm nuts or believes in the family link. She isn't very up on PANDAS, but did agree to give me the ongoing antibiotics based on a treatment plan sent to her by Dr. Murphy for my oldest son. You all know how it is, they are either with you or think your some kind of crazed mother making up illnesses for your kids. Whew, that gets so old after a while.

 

Sarah, I have actually been thinking of stoping most everything except the fish oil, but I wanted to give the 5-HTP enough time to work if it's going to before I do anything drastic. He has been on fish oil for years so I know we are good with that. It seems that anytime I try to talk to my son about what is going on he just gets extremely upset and cries and is so apologetic for his behavior. It will just break your heart. He really doesn't seem to understand his actions or be able to articulate his feelings. So I am so hesitant to bring it up to him anymore. I'm just not sure what is right or wrong anymore. It is so frustrating. Of course I only want to do what is best for my precious child, but at this point I am not sure what that is. I am so hesitant to use medication. I mean, it worked well for my first child and heavens knows we probably could not have gotten through that first acute phase without it. But it has been a long road to wean him off and I'm not sure I want to get on that horse again. I guess it is day by day till our appointment next week. Thanks for your help!

 

Dedee

Hi there. I wanted to jump in and tell you that my son had horrific effects from 5-HTP. I noticed you said you didn't see any change which might be a good thing. The 5-HTP made my son go totally OCD on me: horrible intrusive thoughts that had him in tears daily. Once I took him off of it, I saw a change within a day. My son isn't PANDA's to my knowledge. He started tics back in NOv 07 out of the blue but he had always been an anxious child and needed constant reassurance since he was 3 or 4. I see the tics as a byproduct of his anxiety disorders. Well, I'm not ruling out TS or PANDA's either.......isn't this a wonderful roller coaster we are all on???

Bonnie

[Dedee]

Thanks so much for the number for Dr. Murphy. I was freaking a little when I didn't think I had access to her if needed. I appreciated the input.

 

Dedee