WOW! It's back!

[peglem]

I'm so excited! Really missed this forum. Tons of things happening with Allie. Sure need this support.

[Lara]

Hi Peg. Good to see you again.
Wondering what ever happened with all the Strep. problems that your daughter was having.

[peglem]

Thanks for remembering. She finally had a tonsillectomy at the end of July. It went pretty well. But about 2 weeks after- once she was off of pain meds and seemed to be healing fine- she started getting this photophobia thing- and flying into viscious rages again. She had a yeast infection and the antifungal cleared that up, but still the photophobia and rages continued. So, we kinda figured she was in some kind of pain- migrains? seizures? Also, losing weight from not eating (she really can't afford the pounds) So, now she's on valium, which really helps, until we get figured out what's going on with her. Just finished a bunch of blood work and got a referral to a neurologist. This is so scary and hard to see your child in so much pain and not have a clue @ what to do. Also, her school, which I love, is saying that if they don't see improvements by the end of the year, they are going to recommend placement elsewhere. They can do this, because they are a private school. They aren't really being mean, just feel like they aren't helping her right now and she's not benefitting from their program. The last 3 months have been real hellish around here.

[SuperMama]

its back - what a shocker. See now I thought it was all dead and over. Well done JL.

[Lara]

Thanks for remembering. She finally had a tonsillectomy at the end of July. It went pretty well. But about 2 weeks after- once she was off of pain meds and seemed to be healing fine- she started getting this photophobia thing- and flying into viscious rages again. She had a yeast infection and the antifungal cleared that up, but still the photophobia and rages continued. So, we kinda figured she was in some kind of pain- migrains? seizures? Also, losing weight from not eating (she really can't afford the pounds) So, now she's on valium, which really helps, until we get figured out what's going on with her. Just finished a bunch of blood work and got a referral to a neurologist. This is so scary and hard to see your child in so much pain and not have a clue @ what to do. Also, her school, which I love, is saying that if they don't see improvements by the end of the year, they are going to recommend placement elsewhere. They can do this, because they are a private school. They aren't really being mean, just feel like they aren't helping her right now and she's not benefitting from their program. The last 3 months have been real hellish around here.

Hey Peg,
I'm sorry to read that your battles are still on-going. Your daughter's not had a good year has she. I'm hoping that some answers will come soon.

My daughter had a lot of illness after she'd had a virus one time. [I don't know if you remember me, but it was actually my son who'd had the problems with the Strep. and that's why I remembered about your daughter] Eventually the doctor here in Australia diagnosed her with Post Viral Syndrome. My daughter's comment at the time was "oh great! another syndrome!" lol. Anyway, they had tested her for Epstein Barr Virus and other things, but couldn't really pinpoint any particular type of infection or anything that would cause the numerous symptoms, apart from the fact she'd had a very nasty cold/flu type virus and didn't recover well. All seemed very vague to me at the time. For months she looked and felt sickly. She also had photophobia and was lethargic, sleeping too much and totally lost her usual happy self. If she'd not had the photophobia to the degree she did, then I would have thought she was in a depression, but it was obvious that something else was going on to trigger the way she was feeling. It took months for her to get back to feeling better and she missed a lot of school as well.

[peglem]

So, did she just get gradually better? Allie's photophobia w/o the valium is so bad she can't even watch tv. Worse, she can't use her aug comm device with a lighted touch screen. A huge complication in treating my daughter is that she is nonverbal and has a lot of trouble communicating. She doesn't get lethargic though, just very aggressive, absolutely miserable and self abusive ( I even wonder if she could have a detached retina or brain damage from banging her head). She can't sleep and won't eat anything except ramin noodles (which I spike with vitamins!). But, for now, though I hate giving it, she is functional with the valium and we can give it as needed so she's not drugged up all the time. Anyway, thanks for sharing- people from her school report several children who got photophobia after tonsillectomies, but theirs sounds like it was a side affect of the anesthesia. This has gone on too long to still be that. Thank God, she has a doctor who is taking this seriously and willing to investigate...though we may never really know.

[Lara]

So sorry to hear that Peg. Sounds really dreadful for her. My daughter did gradually get better with that episode, but it did take a long while.

I will be thinking of you and your daughter.
take care,
Lara

[Isabelle]

Peg my son got a "sore throat", by his own admission, it started with gulping sounds early July, not eating, at the end of July it was a constant wheezing sound not able to sleep and his self-injurious behaviour (some headbang, punching his face and biting his arms) got worse to the point that he got a bad infection in his arms and I had to call 911 at the ER was treated with Kefflex, antibiotic, slowly the wheezing sound and the arm infection went away it took about two months to feel better. (Worth to mention at the ER the doctor wanted to "hospitalized" and "treat" him...of course with Zyprexa, that I couldn't really care for him, etc.)

He came home photophobic he couldn't stand lights, still a bit now, not so bad. I guess from Zyprexa and Valproic acid. He is off valproic acid for the last two months and slowly back to himself, very slowly.

Some of our non-verbal autistic kids take a looong time to recover from the side effects of sedatives, anesthesia, antipsychotics, benzodiazepines (Valium, Ativan, etc), etc. they are all neurotoxic drugs and most doctors have no idea that their "behaviours" many times are adverse effects.

[peglem]

There are just too many variables to target a cause. Her pediatrician said it looked like a reaction to medication- but she was not on anything at the time. This did not show up until several weeks after she was anesthetized. My guesses: 1.Candida- she was on an awful lot of antibiotic for @ 18 months before tonsillectomy. She took a 2 week course of antifungal- but maybe it wasn't completely eradicated. 2.The strep may still be with her- but now rapid strep test won't work, waiting on the results of her ASO titers. 3.Strep is infamous for causing autoimmune problems- may be that. 4. her SIB's may have done some damage 5. Her last EEG was @ 2 years ago and showed seizure activity- but they did not consider her behaviors to indicate seizures. We tried some seizure meds (trileptol) which increased SIBs so we quit. But, she could be having seizures. See, there's just too many factors to reach a sound conclusion. So, we're trying to get some evidence to know what direction to go in with her.

[Lara]

Some of our non-verbal autistic kids take a looong time to recover from the side effects of sedatives, anesthesia, antipsychotics, benzodiazepines (Valium, Ativan, etc), etc. they are all neurotoxic drugs and most doctors have no idea that their "behaviours" many times are adverse effects.

Hi Isabelle, good to see you again here.
It's been my experience that medications can have adverse (or oversensitivity) effects on our verbal autism spectrum kids as well.

[peglem]

Ped's office called today- ASO titers came out high. They're sending me a copy of all the test results, but that was the one mentioned as being out of normal range. She had just finished a 14 day round of antibiotics when the blood was drawn. Shoot, maybe the titers just haven't gone down yet? He wants to repeat the test in 6 months. I'd kinda like to do it @ once a month so we can see if they are falling or rising over time. Anybody know anything about this? I know the time it takes for titers to go down varies from person to person- but Allie was on almost continual antibiotics for months before tonsillectomy and for another 10 days following, then another 14 day round about a month later. How could she have high titers? What should be done about it? I don't want to keep giving antibiotics.