melanie

Hi Dans been doing very well(thank god) He had PEX (5) and still having IVIG every 21 days .60 grams. He is on 250 mg depakote and we have added Doxy about 1 1/2 months ago I dont know but I think the Doxy is really helping him. I wanted to ask if anyone else is using it and having simular success? I see the neuro who want to do PEX again (ughh) March 1he also percribes the Depakote.He doesnt perscribe the IVIG or the Doxy .The immunologist does those. Anyway just a question if anyone has anything to add I would be very greatful Melanie

UGHHHH!!!

Seems ok. A bit of testiness but not bad enough yet to give up. His stomach seems ok but dosage is low. Thanks. Lo e all u guys. This is the best forum in the world.

What's TBI.

Saw the immunologist and she decided to put Dan on doxy for his acne. Aside from the stomach issues is there any other side effects?

I dont think it was helping but.. he wasnt prescribing it and danny was on a low dosage so thats why.I would like to try it again because he does alot of sef talking and I think it does help with that Melanie

A quick update since the PEX in November. After the 5 exchanges in November things have gotten better.Tics(cursing)is MUCH improved.There is no more motor tics at all.(hand claps).He is still recieving IVIG .60 grams every 21 days and doc has put him on Depakote 250mg and has removed the Namenda and the Intuniv.We may go back to the Namenda but never the Intuniv.I think that made him angry. His moods are much improved and his rigidness is less.I dont know if its the depakote or the PEX.He still gets mad but 1x per week instead of daily outbursts.Hes alot more focused at school and much more pleasant to be around.We can have a conversation around him without him telling us were stuttering.Still hears stuttering when people talk but not nearly as much.I would say hes 50-60% improved The Dr says he going to do the PEX again in a few months.I dont think danny will approve of it.He wasnt happy with the procedure at all.He does feel better and I can see his improvement. Sorry for the break but I almost feel whenever I say good stuff about his progress he goes backwards. I miss everyone here sometimes and I read alot of your stories.I pray for all of our children. Melanie

I hate to post this because Im afraid Ill jinx things. After the post I started the depakote with danny. The very next day things changed.He is doing so well right now Im scared.Not sure if the PEX kicked in or the IVIG with the PEX or if its the Depakote ughh. I know the depakote isnt soposed to work for 2 weeks but it was like the next day. I am going to call the Dr today and pick his brain,I do think hes having an issue sleeping. I stopped giving him the intunuv too Too many changes at one time.But things are good soo Melanie

Dan went back to school 2days after the 5 exchanges. Dr didn't tell me otherwise.

Sounds like an awesome plan. I'll keep my fingers and toes crossed.

Ok any one use it??? Im not happy but Im thinking I have too.. Tell me the good the bad and the ugly!! Melanie

Hi Sorry I havent been on so much been busy..Well things are ok Its definitly not what I had hoped for. 5 exchanges 6 days in the hospital ,I was hoping it would be a cure.Dans had 2 IVIGs since then too and I do see hes calmer not so antsy.His anger is still apparent,not as bad ,shorter bouts.I am disapointed but I am still optomistic.Dr said it could take time.I feel nlike thats what they all say to shut me up. So no miracle here unfortunatly .He still hears stuttering when people speak he still doesnt like certain word or phrases and he still tics(vocal). Dr did say he wanted to repeat the PEX in 6 months I ont know what Ill do in 6 months. Is he better than before the PEX,Id say yes but not what I thought. I actually just called the md I m thinking about doing some medication.Hes just never happy always aggitated. I need a happy pill any one have a suggestion? Melanie

We tell the school he has an egg allergy. That's what our md told us to say.

Saw the Dr yesterday for follow up He said he sees danny alot calmer not as anxious.I agree He is calmer gets through things a bit quicker than befor PEX. He is still getting IVIG ever 21 days samme dosage .60 grams. We are 2 weeks into it and DR says we should still see more results soon. BUT HE WILL PROBABLY WANT TO DO THE PEX AGAIN!!!!! I almost fell off the chair UGHH I didnt tell danny He will check him agin in Feb 2012 and then tell us what to do..I hope to see more good stuff Tics are still there not as bad but he really hasnt been stressed to much. Hard to tell with danny sometimes I think I just get usto his behaviors and am looking for good stuff all the time Melanie

My son had 5exchanges over 5 days. He gets ivig every 21 days and has for over 2years. I don't know if I see anything from the PEX as of yet 21/2weeks He too has ASD. I don't know if there is any true answer to your question. I kind of think the answers will come from someone here. Melanie

We just finished PEX. We did 5 exchanges in NYU. We were in the hospital so I'm sure it was expensive. I believe my insurance covered it. Haven't received any news other wise. I don't see anything great. Dr said could take upbto 4 weeks. So I'm still hopeful. We have been doing IVIG for 2 years every 21 days. Let us know. Melanie

Well we probably win for the most IVIGs on this site so heres my advice Drink lots of water before the procedure..LOts and Lots it will help with the inserting of the IV line and with any headaches Dan had steroids for the first few at a high dosage and as time went on they lowered the dosage. Doesnt get Benadryl any more but did for the 1st year.(hes had IVIG for 2 1/2 years every 21 days now) Advil after the infussion just give it even if you dont see a headache .It may come so if he can tolerate it do it!! Glad you are getting the IVIG let us know how it goes.. Melanie

Hi peg. I was going to post tonight. He's been doing pretty good. He's having some iPod issues so that always throws him off. It should be fixed tonight so i will watch closely. He's been getting through things more quickly. Not sure if it's just a coincidence nothing wonderful. Write more later.

Totally feeling your stress. Keep sharing. It helps. Try to get some sleep tonight. Tomorrow will bring good things.

Hi I guess I missed alot I just went to bed last night.He woke up ok.I didnt tell him we were doing an IVIG afterschool ,didnt want to stress him out all day. Its a home infusion hes had many many.Dr wants to continue with it.. The neuro is one of the best in the world.Knows Pandas and autism..I trust him.Dannys autism is at a high funtion.Has many issues but we believe are pandas relatedOCD, Tics etc. I love this site if it wasnt for the women and some men here I wouldnt have made it through last week at NYU. I wouldnt have known as much as I do or been able to get the services danny needed.IE: IVIG and PEX and the other many interventions we have tried.. I always answer questions when people IM me .I have spent time on the phone over the past years with many people on this site. I would love to meet all of you and give you a big hug. I just am growing tired of not getting the results I want.I am a big baby.I know I am blessed ,being able to provide this help for danny.Many here can not get insurance to pay . Ill keep posting and PLEASE respond to me it helps so much. Melanie

I don't think the PEX helped at all We are doing an iv tomorrow. I'm so upset. I can't take this. His iPod isn't sinking and his OCD and anger is off the charts. Very discouraged. Melanie

Hi I cant really say things are getting better yet,Actually he has been pretty angry. I dont know if this is normal or if my expectations are to high Melanie

Last one today. He's hooked up. I'll keep everyone up on the progress. Hope there is progress. Melanie

Dans on cipro for a uti. Anyone use for anything related to pans?