Living with Acute Glue Ear and Ear infection. Alex's story.

Fewer Infections.

2011-04-24T16:23:00.000-07:00

On a more positive note, Alex's infections have really reduced in frequency since we started him on the Equazen fish oils last October, along side his eczema. In fact his last infection was in December. He has not gone four months without an ear infection for years. We are sending him back to school and hope that this will not result in his health deteriorating when he comes into contact with all the bugs and viruses that can trigger off ear infections.

Allergic reaction to gluten and soya; day eighteen.

2011-04-24T16:01:00.000-07:00

Alex is finally quiet at night again and although he is still shouting and yelling a bit during the day we are nearly back to where we were before he ate the offending food.Recovery from that one mistake has taken nearly three weeks. He has colour in his face again and the dark circles under his eyes are more or less gone.

Allergic reaction twelve days on.

2011-04-19T14:45:00.000-07:00

So now it's twelve days after Alex ate the food he is allergic to. His dark circles under his eyes are much better and his ears are no longer red. He is not complaining of painful ears as much. His excema, which returned, still remains. His energy levels are improving.
Though he is no longer leaping around the place he is still a lot louder verbally than before. He still remains more excitable, insecure and prone to becoming upset over very little. Having said that, even this is getting better. It took weeks for the positive effects of going gluten free to show. I have a nasty feeling that his recovery from this mistake is going to take just as long.

Gluten, Casein and Soya free.

2011-04-13T13:48:00.000-07:00

So after the allergy testing in march we started Alex on a diet free of soya ,gluten and dairy. He had already been dairy free for three years and we removed gluten six weeks before the allergy testing in march. When we removed gluten his sleeping and ability to settle to sleep improved. Bedtime had been terrible for the last two years. By bedtime he would be bouncing off the walls, loud and this would continue once put to bed. He would run and jump around his room very loudly until finally falling asleap at around one in the morning. To compensate for this he would not wake up until eleven or twelve the next day. Since removal of gluten he actually stays in the bed quietly until he falls asleap, now by eleven o clock at the latest. His concentration and focus improved, something that was observed by his home tutor.

After the testing we removed Soya. this further helped his concentration. He began spontaneously answering questions more than before. His focusing on schoolwork for his tutor further improved. He started doing things like spontaneously picking up my bag and giving it to me as we were getting out of the car one day. Stuff like this he would have not done before, basically because he had been too hyped up to notice things like that. I began to trust him to to stay in the car when i got out. The loud verbal rubbish reduced by 90 percent. Gone was the exessive leaping round the house and shouting and squealing out of nowhere I began to be able to take him out in public and it be more pleasant, less stressful experience for both of us. He stopped shouting every time his two year old sister cried. This was gradually imprroved through removal of each substance.
All has gone well until six days ago when we ended up in two social situations where, firstly he was accidentally given gluten, soya and dairy by someone else. Then i thought that as he had had it the previous day, it wouldnt hurt to give him a ginger bread man. We were at a theme park. I had said no to the burgers, hot dogs and felt so bad. Boy are we paying now. His behaviour actually worsened over the following days until it peaked yesterday, the fourth day. Today has been a better day . He is still getting angry, upset, crying jumping around, being vocally noisy all exessively. Though thos is an improvement on yesterday which i would class as uncontrollable. He has been pale, lethargic. The dark circles around his eyes are terrible.He is streaming from his nose, his ears are red. He is back to wanting loose trousers on and his ears hurt. That awful shout that he does at his sister when she cries is back, but again it peaked yesterday; today he has controlled himself much better. We have learned a hard lesson from this. His reaction was worse this time to coming off the foods in the first place. I'm just glad he seems to be recovering.

Gluten. March 2011

2011-03-15T14:12:00.000-07:00

We have taken Alex to a private hospital which specialises in biomedical treatment. After five years trying to findand answers with the NHS as to why he is riddled with eczema, has constant constipation, asthma, ear and throat infections and balanitis, we have finally come to the conclusion that we have wasted our time.
We have been told that he has Leaky Gut and multiple allergies. Indeed we took him for allergy testing yesterday. He was tested for some main foods ie. wheat, milk, cheese, sugar, rice, soya as well as histimine. He reacted against soya and wheat. They measure the heart rate before and after the substance is given under the tongue. If the heart rate changes it indicates reaction to the substance. His behaviour changed immediately it was administered. He became hyperactive, loud, reactive and could not listen. This is the exact behaviour that is characteristic of him and stops him focusing and accessing school.

I read this on a blog today and it seems to explain a lot;
"Thanks to genetic engineering the wheat we eat today has four times the amount of gluten the wheat our grandparents ate.
Most people can benefit considerably from a gluten-free or reduced-gluten diet. Gluten and wheat are blamed for a variety of health problems, including depression, fatigue, weight gain and behavioral problems.

We have been given drops for him to take every day to desensitize him from wheat and soya. Until then he has to stay off both and milk because of his aczema. How we are supposed to do this i am still wondering. Is this the answer we have been searching for and will reduced allergy help his infections, asthma, eczema and constipation? Only time will tell.

Fish Oils

2010-12-05T16:33:00.000-08:00

On 6th October we started Alex on Eye Q Omega 3 and Omega 6 capsules. I read that during a study children were given 6 a day for three months and reported improved concentration and mood. We are now four months on and i have to say they have made an impact. His chronic eczema that has not left him for three years has completely gone. He also had constant constipation which had been present for two years. This has much improved in that it is no longer a daily occurance. His concentration, focus and ability to listen have also shown a marked improvement. Having said that these areas are still a problem, but it has been great to see the change. He is less reactive now and does not get upset or angry as easily. Also his ear infections have become less frequent. His general health has improved, as has his stamina. I would recommend them to anybody.

More Evidence

2010-11-24T06:16:00.000-08:00

Went to yet another meeting at Alex's school. We had to provide evidence from Alex's consultant to say that he was too unwell to attend school, in order for him to qualify for his home tutor. We obtained this and he was awarded five hours a week. What we didn't realise was that we would have to do this every six months in order to keep the tuition going and in order to keep the Education Welfare Officer happy.
So off to the G.P i have gone. She is very helpful. We also have to get one from Alex's immunologist

Tutor.

2010-11-02T18:01:00.000-07:00

Have just discovered that the tutor allocated to Alex is only meant to be short term with the aim of getting Alex back to school. Am really cross because the Education Authority did not tell me that when they were setting this up. I clearly told them that Alex wasn't able to go to school and i didn't know when he would be. But they have not acted on what i have said. Alex is settled with this tutor and should he lose her it will make him even more unsettled.
These people are supposed to be acting on behalf of the child but it is purely about being seen to be doing something on paper and statistics of outcomes. It is not about the child.

Sunday, 31 October 2010

2010-11-02T17:54:00.000-07:00

Alex is settled with his tutor who aeems to have a good understanding of what makes him tick.
He was very difficult on her last visit before half term. He kept trying to run out of the room where they were working to get to me.She made the mistake of blocking him in the room, which is always a trigger for him. So he ran over to a dining chair and tipped it over. Then he ran out of the room and told us that his ear was hurting. We discovered puss in his ear and he ended up lying on the sofa for the rest of the day. Because he doesn't verbalise what is the matter very well he ends up acting it out through inappropriate behaviour. Then once he had got the message over that he wasn't well he was as good as gold.

He has been sick all half term, with the infection and a bug that has been going around. Unfortunately his immune system being depleted means that he gets everything that's going worse than everyone else. But we had Halloween tonight and that gave him some exitement of pumpkins, dressing up and handing out sweets to the trick or treaters. Term time again tomorrow, back to the tutor.

Acidophilus.

2010-10-06T13:43:00.000-07:00

Because of the continuous courses of antibiotics, Alex suffers from constipation. This is despite eating copious amounts of fruit and vegetables. When this happens he is in great discomfort and feels very ill. We have recently started him on Acidophilus from Biocare, which has got rid of the problem. When we stop the Acidophilus, however, the constipation starts again. But at least we have found an answer. On top of that it has also had a very positive effect on his eczema.

2010-09-27T12:52:00.000-07:00

Our son has been allocated a home tutor for 5 hours a week whilst he is off school sick. She came today and seems nice. My son took to her well. He wont work to his true ability at school and they think he can do far less but he performed really well for her. So we are quite pleased. Long may it continue.

Not back to school.

2010-09-10T18:28:00.000-07:00

Son remains unable to cope with group situations, still resorting to shouting, pushing and hitting. BConsequently he remains off school. He has not been since May. The inner ear infection remains. Sometimes the GP can see it, sometimes she can't. Have given up hope of him ever being fit top attend school again, it has been so long.

Another operation.

2010-05-29T14:42:00.000-07:00

Thursday brings yet another operation to put a grommet in where the previous ENT failed to. My son's ear is as painful now as it was before the previous operation. He is back to shouting and aggressive behaviour again.

Torn ear drum

2010-04-27T14:40:00.000-07:00

So finally, after eight months of battering on the door of the NHS to get them to take some action my son got referred to ENT and got his ears examined under sedation. He was in so much pain that he wouldn't let anyone near them. The surgeon found that his left grommet had been pushed out by the infection and cut his eardrum. The grommet was now lying across his eardrum causing even more pain. He removed the grommet but against our wishes did not replace it. Now my son has yet another infection. Horrahfor doctors! Idiots.

Stinky Ear.

2010-03-12T14:20:00.000-08:00

My son has had infected mucus sat in his eustacian tubes since last october, gradually building up until last week it finally exploded out of his left ear. Now his ear is totally blocked and smells like rotting cabbage.
During this time his behaviour has been atrocious. He has been aggressive, hyperactive and his concentration and listening has deteriorated. He has been unhappy and ill. And still it has taken months to get this problem treated through our ENT service. It has taken two years to finally establish that he is getting infections in his eustacean tubes that are not going away and are moving up into his ears and to his throat. It took a year to get his first set of grommets. At least the NHS is consistent in it's systemic failure of children!

Increased awareness and better treatment for Glue Ear and Ear Infections. - Petition - Sign this petition here - Signature page - GoPetition

2010-03-10T14:55:00.000-08:00

Increased awareness and better treatment for Glue Ear and Ear Infections. - Petition - Sign this petition here - Signature page - GoPetition

2010-03-08T09:05:00.000-08:00

Increased awareness and better treatment for Glue Ear and Ear Infections. - Petition - Sign this petition here - Signature page - GoPetition

2010-02-26T16:12:00.000-08:00

My Son had his CT scan of his ears this week. Now we just have to wait and see if it shows anything. Hopefully it might shed light on why his ears hurt so much and so often.

NEW GLUE EAR WEBSITE !!

2009-11-18T06:25:00.000-08:00

I have been working on a new site for a while now. I wanted to put it up because there appears to be nothing in depth about this condition, for parents in particular, to refer to when trying to find out about this condition. Since my son was first diagnosed when he was three he has had three grommets insertions and his tonsilles and adenoids removed. Though the glue itself can no longer build up he continues to suffer ear infections on a regular basis, roughly six a year. He is affected by pain, recurrent hearing loss and these have cause a number of behavioral issues and speech and language delay. The language delay inevitably has caused communication problems. The problems that my son has had have brought me in contact with many professionals and over time i have done extensive research on the subject. My sad conclusion is that there is a severe lack of information, advice or appropriate help for parents wishing to get help for their children and wishing to understand how the varying degrees of glue ear affect children.
There is no in depth site on the web that tackles Glue Ear thoroughly or provides a resource and support for parents. So i decided to create one. It is in it's infancy so check it out and keep in touch with it as it is set to grow quickly and become an interactive in depth resource. Find The Campaign for The Awareness of Glue Ear (CAGE) at www.glueear.org.uk

Glue Ear Awareness.

2009-05-21T15:08:00.001-07:00

WHY GLUE EAR AWARENESS? Category: Life
I have set out on my mission to bring about heightened awareness of Glue Ear. After battling with the health and education system for the last four years to try and get appropriate help for my son, things are quietening down at last. But the effects on him, not only of the condition, but of lack of correct intervention and treatment will be with him for a long time. There is no appropriate program of help for children with glue ear and professionals try to label the children as on the autistic spectrum either out of ignorance or in order to get some help, a kind of help that is totally irrelevent to the child's needs.As the years have gone by i have come across many parents in similar situations to ours, scrabbling around for the little information that is out there. I have come to realise that it was pointless expecting any professional to tell me how to help my son. I expected them to give me the answers, but they knew less than i did. His repeated bouts of ear infections and glue ear since being a baby until the present day (age five and a half) have resulted in hearing problems. He has never learned to listen and so has concentration problems. His articulation is poor as he has learned to talk as he hears. His resulting speach and language delay have caused communication problems, frustration, anxiety and behaviour problems. Through the years i have met many professionals and learned little of use from most of them. All i have learned i have researched myself. I consider myself the professional on my son and no one else. This is why i am working to raise awareness of this little understood and highly underestimated medical condition that affects a huge amount of children. It is for all those parents out there who are going through what we have been through.