qannie47

omg.....In reading this story and reflecting on my pandas son's stay at a premier childrens hospital I reflect back on the odd and eerie feeling that I had there from all of the doctors and many nurses. When the psychiatrists came in to talk to me, I was told it was to talk about my son. I realize now that it was to interview me, and my parenting/mental state. I was open, honest, and willing to hear a different point of view. They ended our consultation supporting that a medical approach seemed to be appropriate. It ended abruptly, and I could not put my finger on what had just happened....I think what might have happened is that I had just dodged a bullet....now more then ever, I hope they are all choking on that O band finding of the spinal fluid....the head neuro guy told me "we don't expect to find anything in the LP, so you wont be needing to contact us again". My spine is shivering.

Is she a milk drinker? Have you gone down the food allergies road? I say this for mood and constipation...

I just checked the side effects of Keflex....agitation amongst other things....why did they go with Keflex when you report that augmentin has worked so well in the past? I would go back to the augmentin. Hold tight!!! You have gotten through this before, and you and your ds will get through it again....Just said a prayer for you and yours....

I contracted a bladder infection right after IVF, abx was used. During my 7th month I got an awful sinus infection, which is related to strep, and abx was administered. Both my children had gut problems: reflux as young babies, and then one lactose intolerant (non pandas child) and my pandas child ended up with milk allergies/eczema and constant yeast infections being his symptoms....my boys are twins btw. I do think though that long before the rampage of spectrum disorders women have become ill during pregnancy and have used abx without all these problems...that being said, this does not take the abx concern off the table as a piece of the puzzle. Very interesting Joybop. I myself am suspicious of cell phones.....they took off in the 80's and no scientist refutes the fact that they emit radioactive particles( I think it is radioactive) that enter our bodies on a micro-cellular level and into our DNA. The dispute has always been % and what is deemed safe levels.

Mine need to be refrigerated as well, but I was told that they hold potency for 30 days when not in fridge.

I have both my kids on a token economy. We had a meeting and they got to pick special privileges. I reward them all day long with tally marks for good behavior. They can bank them and use them. Perhaps something like this might work for ocd? It is much easier on the pocket book.

Not to hijack the thread, but I am thrilled to report that it took only 2 days of higher dose abx to restore dx back to 100%. 5 days and holding....Dr. K explained to me that while it takes IVIG a year to do it's thing, we will continue to experience flares. However, his flares should slowly start to become farther in between, less intense and duration. This seems to be holding true, since he recovered miraculously fast this time around. (GOD I hope I don't jinx the situation by reporting this).

glad to hear that your ds is doing well.

I agree with pr40 with similar thoughts. As we have learned that the problem is not about ramping up the immune systems but more about mis-guided T cells. I know that when I subjected my ds to 9 acupuncture treatments which is a known booster for the immune system, it resulted in a very bad episode. Tumeric, I have read on this forum is a great anti-inflammatory. I think our approaches should be more about trying to keep the system turned off by keeping our kids healthy and of course finding ways to minimize inflammation.

I thought I remember reading something about when one has low Ig levels, ig is one of the protective barriers that help/prevent infection from crossing the barrier into the plasma.....

T.anna, what exactly are they asking you to do? I am confused. It sounds like they want you to go down the Psychology road, but it looks like you already have...with the cbt and the fact that they have blown off your psychologist...Were they specific about what they think you have not done or what they think you should do?

Has your treating doc talked to you about IVIG? My son recently received an auto-immune diagnosis to support his Pandas...and a lot of what I have researched comes up with IVIG.....

with my ds I went through all those same products...what I realized was that it was the gas that was created from the constipation that ended up being the real problem. The gas air bubbles are painful when pushing when eliminating. I give him gas X melts and he goes immediately....they pop the bubbles and it is easier to eliminate.

Geez...it sent chills up my spine to read this and reflect on our fall stay at a premier children's hospital. I now have a fuller understanding now of what was behind the arrogant, cold, non-compassionate and close minded reaction from many of the staff members. I let my ds run amuck to his full extent with no interference from me as his mom so that the doctors could get a good look at what his symptoms were. I can imagine now what they were truly thinking...as a parent, one would not wish for O bands to appear in their child's spinal fluid, but I hope it wiped the smug, incredulous expression off many of their faces.

My non pandas son went thru a phase of stealing and lying. I think your ds's issues is related to his ocd as you have already implied. I think that I would go with his first answer when he admits it. If he changes his story, I would explain to him that you will always go with his first answer (when he admits it), and tell him that the discussion is closed after that. Also, I found with my ds, I doled out the consequence and then let it go. I also gave him high praise for admitting a truth. Remember this phase too will pass.....

wow. I confess I do not have a lot of first hand experience with ocd. Do they also treat ocd thru gut issues? btw...how is school

I cant imagine him be able to hold it. These things seem to take on a life of their own and no matter how bad one would like to hold onto it, I just cant see that it would be possible. Maybe their is something in his diet that is slowing down his bowels?

As a whole, his tics generally involve complex gross motor like repetitive karate chops, running up the same three stares over and over, crashing his entire body into walls and couches. He exhibited some facial tics for about a week after a steroid burst, but then they went away completely. Because of the relaxing effect that the compression therapy has on him I would be hopeful that it could/might work for any kind of tic...since from what I have learned that tics are also a result of internal stress building up and provides a form of release..(although I know it is more complicated than that). I can tell you that the minute I start doing the compression, my ds's entire body starts to relax. I can visibly see it. His eyes will sort of wonder off and he looks like his goes into "la la" land...sounds silly, but I cant think of a better way to describe it. He even will look up at me and give me a big smile, letting me know how much he likes this. I do it for about 5-10 min max

Forgive me if I don't have your whole story or understand private school legal rights. So private schools do not have to follow laws handed down by the Supreme court for example? They just get to make up their own rules? I guess that would not surprise me. Being practical, if your ds is not able to attend school withdrawing his enrollment seems to make sense of many levels, some reasons for which you already stated. Have you made any decisions yet? So sorry that your are having added struggle right now.

Hey T.anna, I agree with you...it was some kind of threat. A very twisted one in my opinion. I did speak to a counselor who would be in a position to call cps and has......her comment regarding yours was, "Cps is so bogged down, even if they would call, cps will ask if the child is in eminent danger and the answer will be no. And when that happens, cps will file the report and tell them to call back when they feel eminent danger is involved". She said, this is sadly to truth about that system. They are so over run with so many cases/calls that they have to prioritize and pretty much only look into the cases that are very severe. I still cant believe that they even thought to try and go down that road though......

Just thought I would share this since it seems to be working so well. My ds started another flare about 6 days ago. In hopes that he would move past this on his own, I only gave him motrin, instead of higher abx dose. Well, it did work beautifully....amazing, but dr K told me to stop. He said that the motrin while helpful, will only mask the symptoms, and is hard on the liver. So, later that day I did not give him motrin at the 6 hour mark. About 2 hours later when I suppose the last of the previous earlier dose was fully wearing off, he started with very high motoric repetitive movements and wall crashing. A sign to me that this was no popcorn flare... So I remembered an old trick I learned for sensory issues. Joint compression therapy. If you don't know the proper term, that is just what I call it... For example, I will ask him to lay down and I will hold his shin and push his leg up and into his knee joint with slow, firm pushes over and over (about twenty times each leg). The kids eyes glaze over almost immediately and his whole body starts to relax. I also, hold onto his for-arm and do the same thing. I push up and into the elbow joint. Then I sit at his feet and grab his ankles and pull his entire leg slowly, getting a deep streeeetch. and hold it for about 30 sec. I also do this to each finger. The whole thing takes about 5-10 minutes. He just loves it. It actually works so well that he stops the motoric movements for hours at a time. I asked the school psychologist to do this for him today if ds starts wit the movements or even frenetic energy...she did it and it did the trick for him even at school....my husband did it tonight while I was at work and again....cessation of movement.... I am probably going to jinx myself by sharing this, but oh well. Maybe it could help some of you.....

I do compression joint therapy for my ds who has big motoric movements when flaring....it works very well.

I just met with Dr. K yesterday to recap on DS. Ds just started another episode about 5 days ago. While I was not sure if it was going to be full blown, I started Motrin (round the clock every 6 hours). It worked beautifully!!! Day 6, yesterday, I met with DR K and reported this to him. He advised stopping the Motrin because it is only a band-aide and does not treat the originating problem. He instead said that he would prefer I go to the full strength abx after 5 days of consistant symptoms. So yesterday I did not give him the motrin after school....as the earlier does completely wore off, I was shocked to see him go to higer lever symptoms....ugh...which for him is repetitive motoric symptoms of running up the same 3 steps over and over and then crashing his entire body against our walls...over and over and over. While I hated to see him in this way, it made sense that the motrin was masking and not giving a true picture of what was really going on and how bad. I am conflicted because I know that motrin helps tremendously. That being said, it seems that DR. K is right. I have decided that I will do higher abx and only use Motrin when I absolutely have too. He scared me about the liver damage. So, I guess I am voting for the abx approach in your situation. Or maybe you can use both? I see how tough it is for you, and I am sorry for your circumstances. Hopefully some of the above suggestions from other forum members will be helpful. Hugs to you.

Do the antibiotics come in other forms...other then pills? Like a liquid form? Can you call your doctor and explain your predicament? Maybe others will chime in and offer some ideas to get the abx in him.;;;

Oh T. Anna, I am so sorry....If you accept prayers...you and yours will be in mine....