Horrible Flair and unsure what to do

[writergal]

Our son started flairing about 3-4 weeks ago and has really hit a bad place. He had a light case of the H1N1 virus in late March. He started coughing after being sick to his stomach and missing two days of school. He was only sick to his stomach twice, and then went into a slight sore throat and coughing. I took him to the Dr. to check for possible strep as he'd just switched ABX and I had some concerns when he started coughing and complaining of a sore throat.

 

Our ped and I were actually doing the happy dance as a positive H1N1 virus meant that his December IVIG was working pretty well- as he'd had a fairly light case of the flu..... and was also around me when I went through a fairly rough case of strep throat that took two strong ABX to clear. Now fast forward.

 

Last week I took him to a ped neurologist in MI that recommended we put him on Abilify....unfortunately that came with the bad news that it would cost $600 to fill the prescription. I phoned Dr. T and he recommended a steroid burst- another tappered one as we had huge success previously and we started yesterday. On Monday, I took our son to a doctor to run some blood and urine tests that will tell us more about his food allergies and amino acids, etc. He screeched at the top of his lungs off and on for about 45 minutes on the drive to the doctors. Tuesday he started cycling through telling me, my dh and two daughters that he was going to kill us. He is currently on Augmentin, Clonidine, and started Strattera two days ago, as well as some supplements through our homeopathic MD that have been slowly detoxing him. The only thing new that is going on is a sudden growth spurt- dr. said we may need to up the Clonidine, but were waiting to see if Strattera does anything. Strattera has some potential unpleasant side-effects, all behavior type stuff we'd started dealing with about a week before giving him Strattera- that actually have gotten much worse in the past 72 hours. ( I'm closely monitoring the Strattera, and it does not seem to have made him worse, he's just kind of staying in a bad place- however this am was better than last night).

 

Right now we're hoping that the steroid burst will work as well as it did in October and we'll get our son back. Hearing your child tell you repeatedly, "I'm going to kill you" and then say I can't hold it, I can't help it is really tough. My Dh will be sleeping in our son's room to help our son feel safe- he's also afraid of being alone, afraid there are monsters in the closet, etc. and in the last 2 weeks he's had some urinary accidents- something that we've not experienced until just recently - and to help hm stay calm and in his own room.

 

I'm hoping we are on the right track with the steroid burst, Dr. T thinks we need to seriously be looking at another IVIG- but since we are still paying off the one in December not sure when that will happen. So anyone have any thoughts, ideas for us? We don't want to put him in a psychiatric hospital either, as we know that any meds he's been given in the past he's been sensitive to- and are concerned they may try to overload him with medication. So one thought we have is my Dh may have to take him to a hotel to ensure that our daughters and I are safe. The extent of his violence is throwing things and recently getting made when his sister was teasing him and hitting her, thereby bending her glasses. Usually he melts down, throws himself on the floor and screams at the top of his lungs.

 

Last night when he went to bed he had red ears, red cheeks (however, he started slapping his face and making himself red about 2 days ago as well) and huge black pupils. We had to give him his antibiotics at night and couldn't give him activated charcoal, but will be sure we are doing so today. I've got calls into our doctors for ideas- but any thoughts, ideas of what has worked for other kids when they are in this phase would be quite helpful. School also ramps him up- he was home schooled for health reasons this past year and just went back to school on Feb. 1st- and hates going to school. We don't want to reward him (he's also brilliant) and have him think that if he starts with the death threats, etc. he won't have to go to school- but have concerns that school is making him worse and are thinking we may need to keep him home for a few days.

 

So that's all of it- any thoughts privately or on this forum would greatly be appreciated. Thank you in advance!

 

Julie

[PowPow]

How old is your son?

Do you have grandparents that he could stay with?

[PowPow]

Have your tried risperdal?

[MomWithOCDSon]

Personally, I think fate was smiling on you with the expensive Abilify prescription. It was not a good med for our DS and only seemed to activate the worst of his behaviors.

 

I certainly hope the abx and steroids help your DS return to a more functional state, but in the meantime, it does sound as though you need some extra assistance in the short run.

 

PowPow might have a good idea: risperdal. During my DS's worst period, we used it a couple of times, mostly to buy him some sleep and us a respite from his off-the-charts anxiety and spin-outs. In our case, a small dose didn't really touch him, and a larger dose knocked him all the way out (he slept for a 12-hour block at one point), so it really wasn't an option on a longer-term, operational basis. But it definitely gave us all that break when we got to a near breaking point.

 

So sorry you're going through this! I support you, though, in seeking alternatives to bringing your DS to a psych ward; I, too, would be afraid they'd just turn him into a psych drug zombie!

[writergal]

Our son is 9. His favorite grandmother is coming tomorrow at noon - she'll be here for a few days, I think we are all counting the hours!

 

No- we haven't tried risperdal. Sounds like we may have to consider it.

[hugs2day]

I think a second antibiotic (10day )might help and also dose Ibu at treatment dose. That always helps my kids. Your son is on Augmentin you might ask the dr. for a combo it seems to help a lot of our kids when the flares are so severe.

 

Azithro is sometimes used in conjunction with Augmentin to calm things down.

 

Also, we used clonodine also but it doesn't really help during exacerbatiions. Are you also using melatonin? It not only helps sleep and mood but it also is an antioxidant for the brain. Very good studies to support that.

 

Does he have allergies? Red ears indicate allergies.

 

When my son was at his worst I sent his older brother to his friends for a sleepover for a couple of days while me and DH got our son's symptoms under control. It was a Godsend.

 

There will be answers but I think they may lie more in modulating the immune system and less in psych drugs.

 

Praying for healing for your family.