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we are losing the battle


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I've been really hesitant to post here - I hate to think what I write might discourage other people. But I am grieving hard and need support...DS14 had IVIG in mid June. Roughfew weeks afterwards, but started to make improvement after week 3. It was a good summer. Had a few bumps in the road. Got sick for a week with a "mystery virus" and slid backwards, but rebounded after it had run its course. The biggest improvments we saw post IVIG was a sense of calm, maturity, and new ability to verbalize his feelings (in the throws of exacerbation last year he could not finish sentences and at times was reduced to sign language to express his feelings). But mid August we started seeing some generalized anxiety creep back in and a few panic attacks. Well, the day before high school was to start (sept. 6th) he got sick. Said his ear was plugged, nose starting to run. 2nd day into school he had several panic attacks and refused to return. Added Augmentin for 10 days to his Biaxin in case this was bacterial/strep - who knows. Did better for 3-4 days then panic set in again. Little brother home sick last Thursday with sore throat and nasal stuff. Took little brother in - rapid negative strep test but put him on a z-pack as he clearly had some kind of infection. Well, Friday ds snapped. Horrible day in school. By Saturday he was slipping. Totally in his head - couldn't look at homework. Didn't get off the couch unitl 1:30. By Sunday he was gone...Spent all day either sleeping or crying or tantruming. Head banging, threw our kitchen chair and shattered it. Asked me to stab him - he doesn't want to live like a freak. Hasn't been at school this week. Now complaining he is sick - throat is sore, feels like crap. Looks HORRIBLE. We are working on getting him a reduced half day schedule at school and per all the docs (spent the day on the phone all day yesterday with the "team") have him on xanax around the clock to calm the panic and high dose Motrin for inflammation until Thurs. I am so sad for him. He was looking forward to high school and went in with such a positive attitude. Even kept on trying after things weren't going well. He feels like his life is over. Won't listen to the "this is temporary". He's depressed, ill, and the thoughts are going 80 miles an hour in his head. We actually got him to write things down on paper last night since he couldn't verbalize it. The list of things he wrote in his head is 2 pages long. I can't begin to imagine how he is dealing with that kind of brain noise. I am so sad. Don't know what to do next...

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So sorry. Tears were welling as I read your post. I feel as thought we've been in that place a time or two ourselves,though it was briefly.

 

I know you will hang in there, that's what moms do. And your son knows that, too. Something in his system needs more support, and you'll eventually sort out what that is. But in the meantime, just love him. That will help him . . . knowing you love him, no matter what.

 

My thoughts and prayers go out to you, along with a big cyber hug. :wub:

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So Sorry!! Hear are some words of encouragement. My dd is 18 now and is away at college and loving it. Four years ago when she started high school I never could have imagined her going away to college. At 14 she was at her worst with anxiety and panic attacks and rages. It may be some hormones playing in at this time along with everything else going on. Looking back now 14 and 15 were tough years. The fact is you did see some good times and you just hit another bump. You will get through this. I truly feel for you and your son. It is sooooo mentally and physically exhausting. Just try and stay positive.

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I've been really hesitant to post here - I hate to think what I write might discourage other people. But I am grieving hard and need support...DS14 had IVIG in mid June. Roughfew weeks afterwards, but started to make improvement after week 3. It was a good summer. Had a few bumps in the road. Got sick for a week with a "mystery virus" and slid backwards, but rebounded after it had run its course. The biggest improvments we saw post IVIG was a sense of calm, maturity, and new ability to verbalize his feelings (in the throws of exacerbation last year he could not finish sentences and at times was reduced to sign language to express his feelings). But mid August we started seeing some generalized anxiety creep back in and a few panic attacks. Well, the day before high school was to start (sept. 6th) he got sick. Said his ear was plugged, nose starting to run. 2nd day into school he had several panic attacks and refused to return. Added Augmentin for 10 days to his Biaxin in case this was bacterial/strep - who knows. Did better for 3-4 days then panic set in again. Little brother home sick last Thursday with sore throat and nasal stuff. Took little brother in - rapid negative strep test but put him on a z-pack as he clearly had some kind of infection. Well, Friday ds snapped. Horrible day in school. By Saturday he was slipping. Totally in his head - couldn't look at homework. Didn't get off the couch unitl 1:30. By Sunday he was gone...Spent all day either sleeping or crying or tantruming. Head banging, threw our kitchen chair and shattered it. Asked me to stab him - he doesn't want to live like a freak. Hasn't been at school this week. Now complaining he is sick - throat is sore, feels like crap. Looks HORRIBLE. We are working on getting him a reduced half day schedule at school and per all the docs (spent the day on the phone all day yesterday with the "team") have him on xanax around the clock to calm the panic and high dose Motrin for inflammation until Thurs. I am so sad for him. He was looking forward to high school and went in with such a positive attitude. Even kept on trying after things weren't going well. He feels like his life is over. Won't listen to the "this is temporary". He's depressed, ill, and the thoughts are going 80 miles an hour in his head. We actually got him to write things down on paper last night since he couldn't verbalize it. The list of things he wrote in his head is 2 pages long. I can't begin to imagine how he is dealing with that kind of brain noise. I am so sad. Don't know what to do next...

 

I'm not a huggy person but I wish you were here so we could give each other a huge hug, and long cry, and eat some dark choc & washed down with a Diet Coke. We feel as if we are losing our son. We have had 2 IVIG's. The post IVIG times played out ALOT like your son's--down to the "mystery illness" for several days. We are doubling our efforts to get to rule out any biological bases for his behavior, b/c he isn't going to live here to a much older age b/c our 11 1/2 yo old son is getting too dangerous. The anxiety & inflexibility, rages, tantrumming, violent behavior--we've heard the "Kill me" plea. I usually do not have nightmares, but I woke up with Evan banging a board along our heads in my dream. Not a stretch.

 

We are off to a lyme doc tomorrow b/c of the IGeneX results. The positive Babesia FISH test is the one that really makes me go "Hmmmm". I don't even know what I think of this appt. Just kind of feel numb. Maybe there is nothing else to be done. We are also making an appt w/Dr. B --no offense to Dr. K. Dr. B is more skilled & methodic abut his look at the immune system. We all go back on abx today--still evidence of strep based on ASO/ADB results. My oldest girl will take Clindamycin. I am feeling that we are running out of time and we will end up chasing our tails.

 

For now I will press on--one day at a time. Cling to my faith, knowing that God is not going to leave us hanging.

 

PM me if you want!

 

Dawn

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wornout and iowa...i am so sorry for you an your children..

we know they are in there...

maybe it would be of comfort to tell them there are a lot of parents and docs working on this every day..and every day..we get one more tidbit...

 

have you looked at gut issusees ..clostridia in particular...you don't have to be hsopitalized to have it...just like people walk around with strep and odn't know it...

 

just a thougth...all are in my prayers

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Tears filling here too. I am so sorry and I know exactly how you are feeling. We are in almost the same situation here. My son turned 16 a few weeks ago. We had IVIG in mid May. We started school 2 weeks ago and yesterday I decided to take my son out of school for a while. He started to stop his sentences in mid sentence too. Most of the time he won't respond to my questions. He is taking little pieces of food to his mouth and putting it back on his plate over and over. He is mumbling jibberish a lot. I think all the exposure puts them into yet another huge exacerbation. This is so hard is so sad. I'm thinking of doing another IVIG (that will be #2). I am also thinking about possibly adding some kind of antipsycotic med like Zyprexa or Risperdol.

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thanks to all for the words of support. It really does help to cry with someone. He has turned away from me and is leaning on his dad, which is a first, but good - takes some of the pressure off of me and probably makes dad feel less helpless. He wouldn't go into the school with me to talk with his counselor, but was willing to go with dad. Dad is gonna see if he can get him to his therapist later today too. The school wants him to go back tomorrow but he is sick and I think its setting him up for failure. But the longer he's out the worse going back gets.. catch 22

 

Joan - I am so sorry to hear about your son. I have been wondering if the program you had him in this summer had helped. Have you tried getting him to write? It seems like a different function of the brain is being used and you could see the relief on ds after he finally got it all out. Can I ask - what did the school say about you taking him out? It feels like there's so much at stake now that it is high school.. I agree that the exposure is just too high. That's why we're trying for the half day. He said that was a 5 on his anxiety scale, and might be able to manage that.

 

Iowa Dawn - numb...I get that feeling entirely...scared and feeling like you can't live this way much longer - i get that too. we're going for the Igenex test as soon as he is physically better. I am very interested to hear what your lyme doc has to say. Can you keep me posted?

 

On an interesting note, I had a conversation this morning with his former therapist, who is an amazing OCD expert and running a hospital clinic in IL. He definitely thought he could help, but knows this has been going on for ds 8 years+ despite all our intervention, and started to talk about the new brain surgeries they have developed for intractable OCD. In one of them they actually go in and burn a small hole through the basil ganglia!! Scared the crap out of me, but he said he was just telling me this so I wouldn't lose hope that nothing else was left to try...

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On an interesting note, I had a conversation this morning with his former therapist, who is an amazing OCD expert and running a hospital clinic in IL. He definitely thought he could help, but knows this has been going on for ds 8 years+ despite all our intervention, and started to talk about the new brain surgeries they have developed for intractable OCD. In one of them they actually go in and burn a small hole through the basil ganglia!! Scared the crap out of me, but he said he was just telling me this so I wouldn't lose hope that nothing else was left to try...

 

Mom --

 

I actually met a young man at the IOCDF conference in July who had this brain surgery a couple of years ago. I guess he had been through every other possible intervention (met his parents, too), including a stay at the Rogers Memorial inpatient program in Wisconsin, and he was still completely incapacitated by his OCD. I'm not certain of the numbers, but I think only something like 13 people thus far have actually had this surgery? The young man . . . 19 years old, as I recall . . . still has some OCD, but his parents say that the surgery was the only thing that made him functional again. Sounds pretty scary though, I will say. There was a session at the conference on this surgery; my DH attended but I couldn't bring myself to do it. :unsure:

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On an interesting note, I had a conversation this morning with his former therapist, who is an amazing OCD expert and running a hospital clinic in IL. He definitely thought he could help, but knows this has been going on for ds 8 years+ despite all our intervention, and started to talk about the new brain surgeries they have developed for intractable OCD. In one of them they actually go in and burn a small hole through the basil ganglia!! Scared the crap out of me, but he said he was just telling me this so I wouldn't lose hope that nothing else was left to try...

 

Mom --

 

I actually met a young man at the IOCDF conference in July who had this brain surgery a couple of years ago. I guess he had been through every other possible intervention (met his parents, too), including a stay at the Rogers Memorial inpatient program in Wisconsin, and he was still completely incapacitated by his OCD. I'm not certain of the numbers, but I think only something like 13 people thus far have actually had this surgery? The young man . . . 19 years old, as I recall . . . still has some OCD, but his parents say that the surgery was the only thing that made him functional again. Sounds pretty scary though, I will say. There was a session at the conference on this surgery; my DH attended but I couldn't bring myself to do it. :unsure:

Is this procedure like the one for Parkinson's? I kinda remember seeing something with Michael Fox and some kind of brain surgery.

Edited by tired mom
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I'm so sorry. I assume you are trying prednisone or advil, and maybe a change in abx. So all I can say is that my heart is with you. Your post (and Joan's) made my heart race and I felt the need to do something. I know how horrid this situation is, and will pray that you find answers and that he can go with you to receive them. OCD is a horrid horrid illness, whatever the cause.

 

You do know now that you have an infection based cause. So I send you my faith and hope that you will find help for him. I've also met people at the OCD confernce who have recovered from very severe situations. It took me a while to be able to hear their stories, but I now find them to be full of hope.

 

Wishing all the best for your son.

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Highschool's not easy & we P.A.N.D.A.S. kids definitely get the short end of the stick as far as just how freaky freshman year is, if you ask me. The first semester of mine was absolute H###.

I don't have time to say as much as I would like to but it WILL get better!! I know you said he is nonverbal but I would talk to him if he'd be willing to. I've talked to a lot of the kids on here. Just a thought. I hope you start seeing improvement soon!!! <3

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