Need Your Best Wishes and Support

by derekwong28

Posted: 15 years ago 32 replies

OFF TOPIC

I am in Thailand for our summer holiday at the moment with my family at the moment. My wife and I are very worried about our elder 7 year old daughter who is autistic. In the past several months, she has been having more and more severe tantrums. Many have no explanation but when there is a reason, it is usually trivail She would suddenly squeal at the top of her voice and start jumping up and down to the extent that we are very worried that she may injure herself. The scenes are reminiscent of those in the film exorcist when the girl turned her head 360 degrees.

In the week before we arrived in Thailand. She had big tantrums at 5 different shopping malls in Hong Kong. Everytime, there was a crowd looking at us and we heard some pretty nasty comments. Thankfully, nothing much happened on the flight. However since our arrival here, she had nasty tantrums at two different restaurants. The last one took place yesterday afternoon and was particularly nasty. Without warning, she suddenly yanked the table down as the food arrived so that everything fell on the floor. We had to abandon lunch immediately and asked the restarant to pack our meals for us so we could eat it at our hotel. We decided to ground her for 24 hours and thankfully, nothing happened today. This was the first time in many days when there were no tantrums.

She is on medication for her tantrums and hyperactivity already. The dosage had been raised several times and I don't want to go any further. It seems that whenever the dose was raised, it would work for a while but things would come back with a vengence. When she was not having tantrums, she would either be very hyperactive or just plain mischievous to test our patience. If her tantrums persists and increase in severity, I just cannot imagine how things will turn out. It is now apparent that she cannot be accompanied by one adult alone as none of us have the strength to control her.

I think that the major reaon why things have deteriorated so fast was that her school was closed one and half months early for the summer because of the swine flu scare. As a result, she became rather disorientated. Our only hope for this holiday was so that she could be calmed down sufficiently before her next school year starts. We are resigned to the fact that she is not a mild case and will probably not turn out anywhere near what we hope.

Derek

Crystal brian 15 years ago

My heartily prays for your daughter.May God bless you and your wife with peace.
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cato

15 years ago

Hi Derek,

My partner is a very gifted medical intuit (psychic) and I will talk it over with him to see if he has any helpful advise. He is usually very good at knowing what would help in situations like these.

I am sending Love and Light your way.

Cato

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Tina Golden

15 years ago

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barbling

15 years ago

Originally Posted by TMG Enterprises

It sounds like she is being overstimulated. Each major tantrum you mention is taking place in a public place with many strangers. Many autistic children have difficulties with strange people and places and any interruption to their usual routine...

I would agree. I'm on several lists that have parents with autistic children, and overstimulation definitely can cause major issues.

Lots of empathy! It's heartrending to see your child go thru that...hope things get better soon.

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Patrician 15 years ago

HI Derek. I am sorry to hear what is going on with your daughter.

This may be totally irrelevant but then it may make some sense as well.

My niece, who was born prematurely at 3 pounds and had a difficult first 3 months on tubes, started 'acting out' violently even at 6 months old - just smacking people for no reason, and things that people laughed at, at the time.

Then as she grew from baby to child, the acting out started to get more overt - totally out of the blue she would get violent and combative and 'throw tantrums'.

It turned out they finally discovered that she is epileptic and the doctors said that these episodes of violence could have been 'precursors' to her epileptic seizures.

My point here though aside from that there may be OTHER causes for the behavior other than autism, and being leary of drugs, it may be the case that they are giving her too many drugs, or too high a dose - or the wrong combinations - even the wrong drug altogether, and it may actually create another problem OTHER than autism or make the autism worse.

After all they really don't know the cause of autism - whether psychological or physiological and can only treat the symptoms rather than to fix the cause.

...just a thought - and you as a doctor probably know better...
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HeySal 15 years ago

Derek - What a frightful experience for a parent to have to go through. I have a friend with Autistic twins, they are adult now - but she found that any changes of routine set them off, and both at the same time, imagine!

I know you are a Dr, but please take your child to a natureopathic Doctor - many of them are regular MDs that deserted the established medical/pharm complex and have much knowledge of both pharm and natural medicine. There are new findings that link Autism to a Vit D deficiency syndrome and a Natureopath or holistic Physician may be able to advise you on some ways to help that won't incur more medication. They also have herbs that will leach heavy metals out of the system which might be causing problems - new environments also often contain new toxins.
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- ConcordeWarrior 15 years ago
  
  Derek - My thoughts are with you and your wife. I hope the situation will settle itself if at least temporarily.
  
  I had thought the same as Sal. Try and see about alternate (or is it alternative) medicine. They some times can cure troubles that regular medicine doesn't and succeed where regular doctors fail.
  
  WF members are here to support and help you.
  
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ecoverartist 15 years ago

I can't give you much advice but I do wish you the very best for being the terrific person you are and doing so much to care for your daughter.
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Dave Patterson 15 years ago

Derek...

I haven't seen donnaleemason in here in a year or better (although I hear from her once a week or so...) but maybe you could contact her for some help or advice as to what she's been doing with hers.

She has 3 autistic children and after a LOT of work her 3 seem to be doing fairly well. She's pretty much become an autism EXPERT..

Try her at donnaleemason (at) yahoo.

You can also find her at Facebook.
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DC Marketing 15 years ago

It is refreshing to see such caring parents. There are times when I almost forget that there are great people in the world that really care. My prayers are with you.
I do know that with prayer, faith and love that your answers will appear.
Gods speed
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doralin 15 years ago

wow, My nephew and niece are kind a hyperactive, but none of us actually think of bringing them to the doctor. We just let them be, and of course no medication taken. When she was two years old, she would hitting and throw tantrums to anyone, especially to me. But now, as she is 7, and her brother is 5, they are better now. Still hyperactive, very, but we kind let them be in their own world. I don't actually agree, as I wanted to bring them to doctor, but I'm afraid to hear a bad news. I think what happens to mine is nothing compare to you. It must hard and take a lot of patients from you and your wife. My prayer to both of you, be patient and strong.
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MizzCindy 15 years ago

Many prayers going out to your family from me!

In addition to all the excellent advice already given, take some time to really evaluate your daughter's diet. My autistic nephew has some extreme sensitivities to certain foods - even additives in foods. His sensitivities/allergies often caused violent outbursts and erratic behavior.

After a lot of trial and error, my SIL was able to pinpoint many of the culprits and change his diet to avoid them, but it's an ongoing battle.

If your daughter is being overstimulated, her routine is changed significantly, her environment is different and the foods you guys are eating are different...well, all those things can combine to make life difficult for her and for you.

I hope you get this figured out. With any person on the spectrum, it really is about looking at the whole life situation. There can often be many triggers.

Cindy
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derekwong28 15 years ago

Thanks everybody for your kind words and support!

Tina, we are aware that she is very allergic to some sort of loud noises but it seems that her tolerance level have gone down a lot lately. Instead of telling us that she doesn't like it there, she throws a violent tantrum straigtaway. We did not have that miuch of a problem in public places before. It is possible that the presence of an audience makes things worse as she may be seeking attention. Her tantrums are just as bad at home but we can ignore her at home but cannot ignore her in public places.

Risperidone is the only FDA approved drug for the treatment of autism related behavioral disroders and doctors are generally loathe to use another drug unless there is a very good reason. We will certainly have an in depth talk with her psychiatrist on her next visit.

Pat, the psychiatist order an EEG for her to look out for any signs of epilepsy. But she just wouldn't cooperate at all on the date of the test. Given how bad her reaction was, we will probably have to wait until next year before we can attempt it again. Sal, we tried some Chinese herbal medicine before when she was younger and it seemed to work. We may try it again but have to make sure that there are no serious interactions with risperidone.

We may well have made things worse by packing her day with various study and therapy routines. Perhaps it is time to wind things down a bit. Her normal younger sister is becoming a big problem herself as well. A lot of it is due to jealousy against her older sister. It is about time we pay more attention to her. Last christmas when she only 4 and a half years old, she told us how she didn't like her mother, didn't like her mother and told us all to die and wanted to throw us all into a gutter full of faeces. So definietely, we have a lot of problems on our hands.

Best

Derek
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chateauRedunet 15 years ago

Dear Derek,
My spouse and I are very fortunate. Our eldest only had moderate dyslexia, which was discovered after several very anxious school years.

I can empathize with you and your family to some small degree. However, the intensity of your challenges calls for profound thoughts and prayers for you and yours.

Perhaps consider a homeopathic or naturopathic physician?

All the best,
Chateau R.
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- Donnaleemason 15 years ago
  
  Hi Derek,
  Dave got hold of me and suggested that I might be able to help you.
  I would like to try.
  It appears that you have multiple problems both with the child and the sibling.
  I won't say that I am an expert but, I do have 6 children, 3 with Autism and 3 without so I have dealt a lot with both the tantrums and the sibling rivalry.
  If you would like to talk with me, you can add me on messenger. I would need some more info before I made any comments.
  No two children with autism are alike but they do appear to have some commonalities.
  I have had remarkable success with my three children and the siblings have developed well with very little in the way of sibling rivalry developing instead an empathy and understanding of autism and how they can assist in their brothers and sisters recovery.
  Msn is donnaleemason@hotmail.com
  Yahoo is donnaleemason@yahoo.com
  
  Would like to try to make your life a little easier and am pretty sure that there are suggestions that would help you and your family
  
  All the best
  Donna
  
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Dave Patterson 15 years ago

bump........
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emofree 15 years ago

Hi Derek

I'm sorry to hear the story about your daughter I wish she will be alright and feel well don't worry cause I'll add my prayers to your daughter as well to give her strength and fight for it. And I'll also add my prayers to you and your family as well.
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derekwong28 15 years ago

Thanks Donna, David and everyone else for your kind words and support. Donna, I will definitely get in touch with you for advice. I will draft and short summary of my daughter's case and pm you. My internet access is a bit patch at the moment.

Thank goodness Kristi seems to have quieten down dramatically after turning the restaurant table over 3 days ago. Since then, she only had one violent tantrum in our hotel and none in public places. More encouraging, she told us that she wanted the music turned down at a restaurant yesterday. This of course we could not fulfil but she did not develop a tantrum as feared. At least we are all in a much better mood now.

Derek
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seasoned 15 years ago

Derek,

It seems like you are at least partially aware but, based on various things I have seen and heard, a MAJOR part of autism is sensory differences. They may be more or less sesitive to HEAT, COLD, SOUND, TOUCH, TASTE, SMELL, TEXTURE, PRESSURE, PAIN. By this, I mean that sandpaper might give pleasure, and a light touch might be painful. They may HATE warmth, and LOVE cold. They may HATE hugs.

If they are being subjected to something that should be painful, they may see it as pleasant. Loud sounds may be hated, but even a whisper of a certain frequency may cause intense pain.

If you can find the patterns, maybe you can avoid them and have her do BETTER! If she can communicate, ASK HER, and listen. her tantrums are probably her way of saying STOP IT!

As for the drugs, you KNOW how those can work. Higher dosages aren't the best. Is there some way you can taper off?

Steve
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derekwong28 15 years ago

Donna, I have just pmed you.

Steve, we believe a big proportion of these tantrums are of a sensory nature. She is probably bombarded with thoughts, feelings, and sensory stimuli that she could not due with. That is why we hope the much quieter atmosphere in Samui, Thailand will quite her down. So far, things have improved quite a bit but she is still throwing tantrums suddenly without explanation. Yesterday, she went from being playful to hyperactivity to throwing a tantrum within 2 minutes. However on the plus side, there had also been many occasions when we expected here to throw a tantrum but she did not.

Supposedly, these type of sensory disturbances could be dealt with by "sensory intergration" therapy which is a branch of occupational therapy. We have given her lots of lessons but the effect is uncertain. In fact, it is quite possible that some of these sessions may be harmful.

The first thing we do when we return to Hong Kong is to discuss with her daughter about the drugs. Of course, we will have to try to avoid situation that may cause tantrums as much as possible but this is not good for her in the long run. For example, we can no longer take her on a train or bus because of the fear that she may throw a tantrum there.

Derek
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Phnx 15 years ago

You might want to check out this Derek (btw have you chatted with Sylvia Rolfe?...she has 2 boys with autism)

[Adapted from the book, "Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother's Story of Research and Recovery" by Karyn Seroussi."]

"My husband, who has a Ph.D. in chemistry, got copies of the journal articles that the parents had mentioned on-line and went through them all carefully. As he explained it to me, it was theorized that a subtype of children with autism break down milk protein (casein) into peptides that affect the brain in the same way that hallucinogenic drugs do. A handful of scientists, some of whom were parents of kids with autism, had discovered compounds containing opiates -- a class of substances including opium and heroin -- in the urine of autistic children. The researchers theorized that either these children were missing an enzyme that normally breaks down the peptides into a digestible form, or the peptides were somehow leaking into the bloodstream before they could be digested."

Full Article:

A selection of Natural Remedies to treat Autism from Earth Clinic.
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seasoned 15 years ago

As PHNX said, some HAVE had luck getting rid of casein and gluten.

Steve
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bookerfall 15 years ago

i wish your daughter the best of luck.
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derekwong28 15 years ago

Hello all, we are now back in Hong Kong. Unfortunately, my elder prompty contracted swine flu (laboratory confirmed) and her school had now been shut again for a week. It seems we are facing a huge outbreak with thousands of cases a day. Therefore, the prolonged school closure was a complete disaster. It may even have made things worse.

We saw the psychiatrist together with the social worked at Kristi's school. The psychiatrist increased her medication to 1.5mg and asked us to follow through with it. the school asked us to give them a complete timetable of what Kristi does during the day so they can ask their psychologist to review it. They are worried that we may well be overloading her with exercises and other activity. He is also going to rebook the EEG to exclude temporal lobe epilepsy.

It seems that Kristi has now quieter follwoing our holiday and of course now the swine flu. I just hope that things will remain this way for a while. Once again thanks for all your best wishes and advice.

Derek
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KimW 15 years ago

Good to hear that Derek.
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HeySal 15 years ago

Glad to hear that you're getting a break, Derek (although sorry to hear of the flu). Just remember this -- you just got some problems early. Eventually everyone's daughters turn 14 and well.........nuff said, eh? LOL.
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- barbling 15 years ago
  
  Lots and lots and lots of empathy.
  
  Parenting is truly a hero's journey.
  
  Hugs,
  
  Barbara
  
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  busadvertising 15 years ago
  
  I am very sorry to hear this sad story. My best wishes are with your daughter.
  
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Jeff Casmer 15 years ago

Hi,

My best wishes for your daughter as well....I live in Chicago and very close to me we have had a couple of deaths due to swine flu.....

Take care
Jeff Casmer
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Usha 15 years ago

Hi Derek

My prayerful wishes to your little one.

I would like to add one suggestion to existing list.Please consider Homeopathic system of medicine for your little one as i have seen some chronic cases were healed using homeo system.

Hope this helps and and wish her speedy recovery.

Take care

usha
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Sylvia Meier 14 years ago

Dereck I have two boys that do exactly the same thing. If you ever need a parents side of things or someone to talk to feel free to PM me or email me and I will help you however I can. Keep your head up and it will get easier as she gets older.

Sylvia
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- derekwong28 14 years ago
  
  Thanks a lot Sylvia and everybody for your continuing
  
  I am sorry to report that things turn a bad turn for us last week. One of the workers at her school sprained her wrist while attending to Kristi during one of her tantrums. The worker went to A&E and was given two days off. The headmistress then called us in for an interview the next day and threatened us with expulsion and suspension. The points raised were as follows
  
  1. Kristi's condition had deteriorated to such an extent that she can no longer be considered as mildly mentally impaired.
  2. Since this school is one for the mild mentally impaired, they do not have the manpower and resources to look after Kristi if she continues like this.
  3. If Kristi injures a pupil or another staff in future, she will probably be suspended for a period of time.
  4. Right now, Kristi is totally non productive at school because of her tantrums. They have to isolate from her class during these tantrums and are very worried that she could injure herself or others.
  5. The headmistress demanded that the school gives her medication, including the first one in the morning. Obviously, the school suspects that we were missing out her medication in the morning which is not true.
  6. She also demanded that I drive Kristi to school in the morning since she constitute a danger on her school bus.
  7. The school also demanded that we make an urgent appointment with the psychiatrist. It transpired that they would really want her to be admitted to hospital for investigation for a week.
  8. If Kristi develops a huge tantrum, they may either have to call us to pick her up from school immediately.
  
  It was obviously a rather unpleasant talk and my wife is rather upset. It seems that the school is much more worried about how Kristi could disrupt their operation rather than the needs of Kristi herself. We find it incredible to threaten a seven year old how does not know what she is doing with suspension as a punishment. But we cannot blame her school for whatever that had happened but are obviously quite worried about the future. The current school seems to rely a lot on disciplinary measures and medicine that may not be that suitable for Kristi.
  
  Luckily for us, Kristi seems to have settled down quite a lot this week. We have reduced markedly her tuition at home and also her therapy. The main issue now is to wait for the EEG and then decide whether extra medication is needed. Or course, my wife and I are very shocked at how quickly things degenerated over these past few months but this is one battle we cannot afford to lose.
  
  Derek
  
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