I don't know what to do anymore..

[lmkmip67]

I will try the Valerian! Thank you! And yes, Nancy, it does help! I had no idea this is where we were headed, when first diagnosed. So hard! I thought it was mainly tics and some little OCD. yeah, right.

 

I would be willing to try psych meds if I thought they would help. But I have heard they don't really for Pandas kids. Do they??

[Stephanie2]

psych meds. this from a mom who took 5.5 years of ###### to break down and try them as needed. what a relief. it is a sad day when you give your child psych meds, but it would be a sadder day when you decide to check out of the game cuz you can't take anymore, KWIM?

 

With that said, I am so sorry and I am right there with you as my ds2 has been screaming bloody murder for 3 nights. I have only used tenex on him once or twice, tonight was almost "thrice" (in the words of conan o'brian LOL). Lately I have had to resort to risperdal for ds6, but that's b/c of medication side-effects. Something that really helps OCD/emotional lability is 5HTP. you have to get a reputable brand. My 50 lb. 6yo gets 75mg at night as needed. Seems to work right away and help sleep. oh, and more importantly, dh and I take 200mg 5htp bid to get through this, also very helpful.

Edited January 21, 2011 by Stephanie2

[peglem]

Some parents find that peanuts or peanut butter helps because peanuts have tryptophan. Peanut butter (especially crunchy) is a great medicine hider as well-that strong flavor hides a lot of sins! (Don't think it'd work for valerian though)

I come from years of raging child episodes. Something that helps us is to never ever let my daughter go for more than an hour without food. I don't know if she's having blood sugar swings or what...but this really minimizes the rages.

[Stephanie2]

I will try the Valerian! Thank you! And yes, Nancy, it does help! I had no idea this is where we were headed, when first diagnosed. So hard! I thought it was mainly tics and some little OCD. yeah, right.

 

I would be willing to try psych meds if I thought they would help. But I have heard they don't really for Pandas kids. Do they??

 

ironically, i don't have much experience using them for pandas (although I was able to calm my 2yo once with tenex during acute exacerbation). I use tenex for hyperactivity as needed (also for rages, takes the edge off) and I used risperdal for steroid side-effects. 5htp (natural antidepressant/antianxiety) is the only thing that has really helped pandas here.

[MomWithOCDSon]

I would be willing to try psych meds if I thought they would help. But I have heard they don't really for Pandas kids. Do they??

 

It really seems to depend on the kid. What does seem to be a thru-line to some extent, however, is that many PANDAS kids respond best to very low doses of psych meds (especially SSRI's) as compared to a non-PANDAS population; Dr. Murphy has written a paper about SSRI's and PANDAS kids in this regard.

 

In terms of the "calming" psych meds like risperadal and Seroquel, our experience is that yes, they can encourage quiet and sleep. So if your child and your family have become really strung out after night after night without adequate rest, then one of those is probably worth a try, presuming the other options like Valerian and/or Melatonin fail you. The first time our DS took risperadal, he laid down after breakfast and slept for the rest of the day. In fact, it was the sonambulence caused by both of these drugs that caused us to decide not to use them anymore; we weren't quite at that "strung out" point yet, and we hated that heavy-handed, drugged response he displayed when taking either of them.

 

But again, if your kid needs rest, I can definitely attest that they can work very well for that purpose!

[cfamily]

Dear Lisa,

 

I'm sorry you are having a rough night. I felt like I was reading about my life! I have two businesses and I get home from work at 10:30 pm on 3 nights out of the week. Then I have to talk my stay at home hubby down from the ledge for an hour and then I do my business paperwork and then I have to do pandas research and read the forums. This is also why I'm posting at 12:30am!

 

We all are worn out, beaten down and have to show remarkable patience, strength and grace when we are living a nightmare that won't end. There is nothing but understanding for you here! I loved the earlier posts about I have a dream.

 

On another note, I will say that my dd10 had bad reactions to both benedryl and melatonin. In her case I believe that maybe she felt a little different and woozy so that just sent the ocd about getting sick over the edge and we had screaming, scratching herself from panic. I have tried to ad more physical activity during the day and we do an epsom salt bath at night and then we do a little neck massage and read/play majoong (sp?) So that has been helpful as we move through our latest 8 week acute relapse with the worst symptoms we never ever could have imagined. We also cut out sugar, caffeine.

 

I'm sorry if you already know all these things, but I'm fairly new to the forum and we would be nowwhere with out the parents sharing their day in day out experiences.

 

After being on Aug, Cefdinir, Azyth 250mg for about a month and a half with no improvement, along other meds for yeast, inflammation, probiotics, we have been doing all the tests for co infections before we visit the ivig or plasma therapies. We saw a wonderful llmd in stevensville, md who did a bicilin (sp?) shot in office and has her on Amox 500 2x per day plus Azyth once a day.

 

All the best to you and hang in there.

 

Sharon

[lmkmip67]

Thank you all so much! It is SO hard right now.I am sure I will get used to it to an extent. This is the first really rough patch like this. I just spent 20 minutes holding him down until he exhausted himself. Then cried for 20 minutes. lol I know this to shall pass. I know he can't help it. I am trying to keep my patience in check. I really. We do yell sometimes. Night is the worst right now. The rest of the day is not as bad. Not great, but not as bad. lol I am going to try laying off benadryl and meletonin for now. And try round the clock motrin for a few days. I am calling Dr. B tomorrow morning. We need a break, even if just a little one.

[Megs_Mom]

I'm so sorry you are all going through this. PANDAS OCD is an awful disease. As the OCD takes over certain part of their lives, it just seem so illogical to everyone, including the child. And yet it rules and everyone is frustrated and angry. How could you not be?!

 

I hope you find the right medical answer for your son very soon. We had stomach and ear inflamation, with both ulcers & chronic ear infections. Dealing with both of those issues, while they did not cure alone, was very helpful to keeping the bbb from allowing all those nasty antibodies to cross over into her brain. We use Prevacid for the stomach issues, which has been a band-aid for the last year. We are now trying to figure out what to do to cure this issue, but the acid reducer (prevacid) did buy us a lot of time.

 

Again, while not a cure, ERP (Exposure & Response Prevention) therapy helped our entire family to cope with the illness. It was very important to us, as every hour of her waking day was controlled to some degree of disability by OCD. Even just understanding what was happening helped me to feel calmer, to keep hope in my heart, and to help her by not adding to the "fire" (most of the time!). There are some good books out there about OCD for adults & kids - have you started reading any of those? Given the current situation, I might say that having an OCD therapist (ERP) on board may be helpful. If this all ends in a few weeks, you can "dump them" when he is subclinical, but if this lasts longer than a few weeks, getting started may make life more bearable in the interim.

 

I know it is hard to describe the terror these children feel, when a simple thing happens "like a cover being wrong". It's not possible to get it right and that impossibility is really hard.

 

I guess I can only tell you that our daughter is now way below subclinical, and is doing so well (knock on wood). There was a time when I could not imagine leaving her even to go out for a cup of coffee. When our days were ruled by terror. It's fine now, so keep hoping in your heart - the other side is real.