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Autism OCD strep throat link antibiotics worked

(13 Posts)
Ledkr Tue 15-Sep-15 13:20:11

Bump again

Ledkr Mon 14-Sep-15 21:47:30

I'm bumping this as my 6 yr old grandson has just been diagnosed and would love to get some support for my DS and DIL.

Joc1970 Thu 14-May-15 11:57:00

Hi my son has PANDAS he started over night with tics verbal and motor but now he's got voices telling him no one loves him and that they are going to shoot him and to commit suicide he is in penicillin. Any information greatly appreciated

keya Mon 30-Sep-13 22:03:41

Hi, How is your son now ? My son is the same. I have sent you a message.
Only found this thread doing an online search today. I didn't know they hide them !

Eliza22 Thu 23-Aug-12 10:16:59

Oh god..... It's starting all over again.

Not that the OCD ever fully went away but it was "do-able". My son is getting more and more reclusive. His hands are raw again. He's muttering to himself and making strange noises 'cause he "has to do them".

Our consultant never felt antibiotics would work. I might approach him again with this.

keya Thu 07-Jun-12 22:33:42

I really hope it doesn't go back to that for you, that's exactly what happens it is so isolating and lonely.

My son would go out but only after taking all day to get changed so by about 4pm I thought we would get a break out from it but he was just the same out repeating the same things, thinking he didn't have enough space etc.

We don't qualify for many things that others we know with better circumstances do, it is very frustrating.

I thought it was hormones first of all but when it got so much worse suddenly and then after taking abx he was back to his best I don't know. When he was born he had a heavy growth of alpha haemolytic strept that wasn't treated with penicillin at the time I can't help but think there is some connection with this and the behaviours.

His hormones would seem to be to a factor with what has happened this year.

I just hope more is known about this soon.

Eliza22 Fri 01-Jun-12 20:32:54

It's sooo strange, isn't it? My exH asked me today, why has there been such an improvement? I have no idea. Hormonal? We were DROWNING in it. Truly awful. My son was disappearing into his own private nightmare and I couldn't reach him. It's still there, but nothing compared to the last 12 months.

We actually got a Blue Badge whilst he was really ill, supported by his psychiatrist. I COULD NOT get him out of the house. And when I did, it was brief and usually I ended up with a parking ticket. "They" have now decided he doesn't qualify for it. He has limbs. He can walk. No blue badge. I'm DREADING returning to our previous isolation/reclusive existence.

keya Fri 01-Jun-12 19:31:41

Glad your son is better too. I would say my son is about 90% back to his usual self the same as he was when he took antibiotics. I am worried that it will come back, so if we do get an app they can see him however he is at that time and hopefully we might get help quicker if it did come back so bad.

That's how I feel the autism is nothing compared to what that was like and nothing I did helped. I already contacted the MP about not being able to get my son in any local secondary mainstream school and they wasn't helpful at all.

Are there any theories as to why it can get better or come back again ? My concern is because the abx worked that it will come back whenever he has an infection like strep throat. Until the past couple of weeks he was severely affected for almost 6 months and it was hell. I don't know why he is better now whether it happened naturally or if the supplements are helping.

Eliza22 Fri 01-Jun-12 09:03:19

Keya, thanks for updating.

Since the second opinion referral, my son has seemed much better. I'm almost dreading getting the appointment through and having to explain that he's no where near as bad as he was when the 2nd opinion suggestion was made by the psychiatrist. Sod's law!

Having said that, OCD does wax and wane and we've been "here" with a slight remission before. God, I wish it was just the autism we had to deal with. That was easy in comparison to this "demon".

I'm sorry to hear about the postcode exclusion to your seeing the specialist and that Islington won't 'pay'. Is it worth approaching your MP? That's disgraceful.

keya Thu 31-May-12 21:22:41

Hi, I have only just seen your message sorry. My son was only better for one week and then the symptoms came back, as the test results came back normal the GP and Consultant Paediatrician wouldn't prescribe more antibiotics. I have been so desperate I was looking in to taking him to the States for treatment. My son was anxious before but not so OCD, that came on very severe. Dr Heyman at Maudsley knows about PANS/PANDAS but Islington won't fund for him to have an app there. There is a lot of info on ACN forums and also a facebook parents site. There is also a private clinic on Harley St with Prof Peter Hill but it is expensive. There is another cheaper clinic with Dr Goyal called Sincere Health near Baker St. We are trying natural food supplements oregano oil, grapefruit seed extact, probiotic and omega 3, 6 & 9 flaxseed oil and have an app at the Westminster Uni polyclinic this is very cheap. I am happy to say that he has been much better for the past couple of weeks.

Eliza22 Tue 15-May-12 12:30:21

Hmmm. My son who is 11, has asd. He was dx two years ago with rampant OCD. He's tried many meds and his consultant psychiatrist has just referred him for a second opinion.

Did your ds display anxiety prior to the OCD or was it an overnight progression? I'm wondering, because I'm at my Wit's end, whether I should ask his dr?

droves Sat 31-Mar-12 21:58:59

Bump ..

Interesting . Glad your son is better . Strep throat is nasty .

keya Sat 31-Mar-12 00:11:19

Hi, My 15 yr old son who has autism recently had severe OCD.
I did a search of autism OCD and it came up with PANDAS where the child has had a strep throat infection and then develops OCD.
The GP prescribed antibiotics and within a couple of days of finishing them he is back to his usual self.
The OCD was so bad he was taking over 3 hours to even get in the shower because of moving things around, he was walking around with his hands outstretched in front of him and didn't have his usual personality.
I just wanted to say what happened in case it might help someone else.

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