Hi, i'm new to the forum, looking for some advise.

My youngest son is 7 and adopted. He had a pretty hard time until the age of 2, when he came to live with us. To say a whirlwind moved in would be an understatement. He was into everything and totally out of control. He screamed constantly as well. After a while, we became aware that he was lactose intolerant, and although there is no proof, we believe he may have had digestive problems from the age of about 18 months. He was diagnosed when he was 3 1/2. It is possible he had severe stomach cramps but had been unable to tell us.

Preschool was a nightmare, and he eventually went to a Nursery school that could manage his behaviour. On starting primary school, just before he was 5, the situation became critical. So much so that he was excluded 3 days after his 5th birthday, and subsequently we withdrew him from school for 2 years.

He has been diagnosed with attachment disorder, which relates to the lack of appropriate care he received as a baby. It affects the same part of the brain as ADHD, and the symptoms are comparitive. There has always been a query as to how much of his behaviour is the disorder and how much is ADHD.

Eventually we agreed to try Equasym, much to my dismay. I relented under the joint pressure of his consultant and my husband and family. While the medication has had the desired effect, a much more placid and managable child, who now attends mainstream school, with support. The side affects have been great. He has lost a lot of weight, he is less than 18kg and looks like a skeleton with skin. His has also stopped growing properly. He takes Melatonin to help with sleep issues. Fortunately this works most of the time. We seem to have a sleepless night every few weeks still.

Another down side has been his abitily to swim. I used to take him every week, and he loved it, would have to be dragged out after 2 hours. Now though he can bearly stay in the pool for 30 minutes without turning blue. And that wearing a wet suit, without it 10 minutes tops. It breaks my heart to see this, especially as he could have joined the local swimming club on his ability.

I have been constantly looking for alternatives to the medication, especially since part of the attachment disorder means he trys to self parent, and the medication interfers with the work we do to correct this. When he is 'dosed up' he withdraws and doesn't like to interact with us, in the evening though he is more affectionate.

For me the side affects are a huge price to pay, but i am wearing myself out trying to find answers elsewhere. The medical profession are quite happy to medicate and can't offer advise. I spend hours trawling through the internet, looking for new ideas. We have tried omega, addictive free diet, homeopathy, and the feingold diet. The later was extremely restrictive, and bearing in mind his weight is an issue and he is lactose intolerant, we had to stop after 3 weeks.

I am at present trying to fatten him up, he can take lactase enzymes (resourced from the net) and then he can tolerate dairy.

I am exhausted from the constant battle, the knowledge that in the long term medication may not deal with the unlining issues and the search for answers.
I dislike him on the Equasym, but can not manage him off it. My patience is at all time low. Everytime he shows signs of being lively, i panic. The medication makes him unnaturally calm.

Taking my other children to their evening clubs is horrendous, he is totally out of control by then, and i reach rock bottom. My blood pressure rockets. Fortunately my husband finishes night work soon so hopefully this will ease. I am constantly aware of his behaviour and looking for the warning signs. The only time i can relax is in the evening. Until 6 months ago i didn't even have that. We had to put an alarm on his door to prevent him wondering around the house at night. Although we don't use it now, its always there just in case.

I suppose what i'm looking for is someone who understands the problems, having had no one for the last 5 years. Most of our friends seem to have deserted us, and family just don't understand it. I am tired of trying to find those answers alone. His behaviour and its management has a massive impact on our family life.

I look at other parents and can't help feeling jealous, wishing for an easier life.

Thanks for taking the time to read this

xxx

It sounds really tough. As far as the weight loss; hasn't the Dr. been monitoring his weight? It is not OK for him to keep loosing weight. My Dr. weighs my child at every visit. If he is loosing weight you might need to try some drinks like "Ensure" to make sure he gets enough calories.

I looked up Equasym and it turns out that it has Lactose in it. Maybe you need to try a different stimulant?

It is not right that it makes you son excessively calm/withdrawn. You should discuss that with your Dr. My childs personality is not affected by her med (Focalin).

You should not feel guilty about medicating your child. It will make it easier for him to learn the correct behaviors to get him by in life. However, it might be a good idea to try something else that will not give the side affects that you are seeing. A lot of people need to try a few meds before they find the right one.

It is too bad about the swimming. My ADDer absolutely loves to swim. However, she will not tolerate cold water. Can you find another pool that keeps the water warmer?

Hi MAGAD, His consultant does monitor his growth/weight ratio, but has been unconserned about it. She finally decided to refer him last month to a specialist, but seems to think his weight and height issues are unrelated. Im not expert but in my thinking if he isn't getting enough nutrients and calories to put on weight properly, surely he isn't going to grow properly. Even the Equasym leaflet says it can affect growth. I feel as though i am talking to myself with the consultant though.

I was aware of the lactose in the Equasym when it was suggested, spent weeks researching the options before agreeing to it, but have been assured it is in such small amount it wouldn't affect him. I'm not so sure. The only other med we have tried is Concerta, and he went manic on it. True we only did it for one day, and that may not have been long and strong enough, but to be honest we had such an horrendous day, we have been afraid to repeat it.

When we first 'discussed' medications Strattera was mentioned but we were quite concerned about it. That seems to be all the options we have had. I think i would feel better about the medication if i could see a difference when he is off it. If anything he is worse. He is loud, controlling beyond imagination, impulsive and uncontrollable. I think that is why i have tried so many alternatives, when he goes, boy are we in trouble!!

I have been trying to 'fatten him up' by pumping him full of high calorie foods. Fortunately i discovered a lactase enzyme that allows him to digest lactose if take 10 minutes before. I have found a malty milkshake drink, with lots of vitamins and nutrients in it, so i am attempting to give him one of those everyday. I think we are making slow progress, but everytime i think we have put on half a kilo, he loses it again. So frustrating.

We made a little discovery with the swimming this week, he can tolerate longer in the afternoon, when he is coming down of the medication. We went swimming on Sunday and he stayed in for over an hour. His lips went blue, but he managed a lot better. The other times he had been swimming was in the morning. I am sure there is a link, but intend testing it by taking him in the morning again to see the difference.

Thanks for taking the time to reply, its so nice to hear from someone who really understands the issues.

It seems very strange that your "consultant" is unconcerned about his height/weight issues. It is a very real issue with these meds. A child should be growing and gaining weight at a certain rate. There will be ups and downs, but it is something that should be monitored. There are specific warnings with these stimulants that you should stop taking them if you stop gaining weight. Do you have an option of getting a second opinion? Where do you live? Are you in England?

There are also many other meds that you can try, and they all seem to be a bit different. Focalin does not have any lactose in it. It is my Dr.'s favorite and all he does is prescribe meds for pediatric behavior issues. "psychopharmacology specialist" I think.

Hi, I thought the weight/ height issue was important as well. She just doesn't see a connection. It would be difficult to get another opinion, our GP admits to no knowledge of medications, wouldn't even perscribe some when he first started the medication to tide us over until we saw the consultant, "because i don't know anything about these drugs." Fair enough but very difficult when you are at breaking point! All he was interested in was telling me about his daughter and her troubles. His pediatric consultant was involved in his adoption medicals, i dread to think how long a referal to someone else would take. He has been refered to someone about his growth, but not in the context of medication. I had never heard of Folalin, i will definately check it out, probably not available in England. At this rate i can see him having to come off for a while, which won't be a good idea.

Thanks

What else do I need to know?

Some children may lose weight with long-term treatment because this medicine can decrease appetite. For this reason, your doctor will monitor your child’s height and weight as a precaution.

If your child is not growing or gaining weight satisfactorily, your doctor may suggest breaks from the medicine to allow growth to catch up.

The quote above is from;

http://premium.netdoktor.com/uk/adhd/treatment/medication/article.jsp?articleIdent=uk.adhd.treatment.medicat ion.uk_adhd_xmlarticle_004713

Maybe you can show this to your counselor. Our Dr. specifically mentioned the high calorie drinks marketed to Seniors if we had a problem maintaining weight.

http://ensure.com/

Thanks for the link MGDAD, i will definately take that next time we have an appointment with the consultant.