17 months and off the centile chart

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Permalink Reply by Wendy Marsh on September 7, 2009 at 20:29

I really feel for you hun and can only imagine how draining it is, my little man is no where near this bad but for what is worth I firmly believe in a mothers instinct being best so I would follow it, if you think its wrong to wait then fight to get the tests you feel he needs.

I hope things improve soon.

Wendy x

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Permalink Reply by marmum on September 10, 2009 at 7:23

Thanks for taking the time to reply. How old is your little man?

We're on the alternate week that my little one's not ill (he was last week) which is a nice change. We saw the homeopath on tues eve. She asked me to give her a chance to crack it (we're a complicated case!) before doing anything like the endoscopy etc. She gave him something to take that night and the next (yesterday) morning and for the next few weekends coming up.

Could be coincidence or not - too early to tell (as for the last 6 weeks he's been eating ok on a 'good' week) - but he ate and drank really well yesterday. He also slept through from 8.15pm - 6.50 am without getting up!

Keeping my fingers crossed.....

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Permalink Reply by Ginny S on September 10, 2009 at 14:49

Hi Marmum

I remember we exchanged emails a while ago. Stella is my second one and is now 22 months old. I am sorry to hear you are still having a bad time. We also had a nightmare until we went to see Dr Shah at Great Ormond Street (privately, he also sees people at Viveka in St John's Wood). We saw Dr Thomson over a year ago and he did manage to get us shifted to Chelsea and Westminster on NHS, which has been ok. However, Dr Shah is the top person in the country. I really really think you must go and see him! Please look at other posts recently on here, re Dr Shah and also Eosinophilic conditions, related allergies etc.

I am absolutely amazed that Dr thomson put your little one back on dairy. That is nuts! 50 per cent of children with reflux have food allergies and intolerances. Both my children are allergic to dairy, wheat, gluten and soy. Stella could not even tolerate neocate. My oldest is ok as he would eat, but my issue with sStella is that she would not eat. She is on a restricted diet and on some allergy medication, very gentle. It has been a miracle In the last three momths she has started stuffing her face. She has gone from off the chart on her height to the 60th percnetile in less than three months. She will now eat.

I firmly believe that children will not eat if they are in pain. If your childn has a gut allergy or intolerance, in the worst case scenrio they will have swollen lymph nodes and blistering in their tummies and intestines. This causes pain and so they will not eat. RBoth my childrne did not sleep at all until they were on restricted diets.

There is a difference between blood allergy and gut allergy. You cannot test for gut allergy except by eliminating food or through endoscopies. Stella was riddled with blisters when she had her gendoscopy. She came off dairy and things started to get better from there. But it was a long road as she is also intolerant to beef, wheat, gluten and soy (soy was a killer). She had to got on a course of steroids to calm her system down.

It is absolutelynot ok for yoru little one to be off teh chart. Dr Shah would say this.

My email is gsurtees@talk21.com if you want to talk to me, email me and I will give you my phone number!

I really feel for you and am on rather a mission as I can't believe all the paediatricians who supposedly know about reflux but do not consier the food allergy angle. Stella and Royr were negative with all their blood tests by the way. Also I tried homeopathy with Rroy but it did nothing as he needed to come off the danger foods. Food exclusion sorted him out copletely. He is also a thriving three year old now, on no meds. Stella is on some anti histamines and anti relfux medications but really doing well at the moment.

Sorry for long post, hope this helps

Ginny x

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Permalink Reply by Wendy Marsh on September 10, 2009 at 17:10

My little man is 19 weeks, who he doing really well but has gone downhill in the last week or so, we have a brilliant Osteopath who has been working with him and is now a bit stumped as to why he cannot sort things completely for us, he has suggested we need some other medication but my GP tells me today he doesn't know what to prescribe so we have to wait a week for him to write to the Paed, obviously the phone doesn't work!!

I am interested in your Homeopath as I don't believe in coincidence but do believe in alternative medicine as we have had really good results with the Cranial work up to now. Does your Homeopath specialise is children and where did you find them?

Hope things continue well over the weekend.

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Permalink Reply by marmum on September 12, 2009 at 10:26

Ginny! How are you?! Yep I do remember you and glad to hear that Stella is doing so well! How is her weight? It makes such a difference doesn't it when you don't have to battle with them to eat. That's so good to hear of a little one who previously wouldn't eat now stuffing her face! The growth in height is unbelievable! Very aspirational and inspiring to hear!

Wendy, how is your little man? Is he your first? Got some more progress on the homeopathy below. I found my lady through a colleague who treated herself and she said it was brilliant. She used to work in a baby shop and the homeopath practised there so she gave me her number. If you let me know your town, I can ask my homeopath whether she has any recommendations?

So the latest on my little man is that we've had 3 great days of eating. We are still on a 'good' week though, and he does eat well on good weeks. However, he has eaten more than good - great would be a more appropriate word.... He also has done amazing on milk - reached a record of drinking 10oz! This morning he drank 9 and a half (there were some days where this would be all he would take in a day let alone a feed!). The sleeping through was however a one off. The last couple of nights he has woken at least 1 time in the middle of the night to drink milk. As hard as it is to go to work with no sleep, I am humouring him as we have a lot of catching up to do. So good news really.

I think the real test will be next week, where if we were to go on the pattern of the last 3 months, I would be expecting him to get ill some time from Monday/Tuesday so lets see.... Monday is also the day that I weigh him, so I'm interested to see if he's put on. (In past good weeks, he did put on a little but then lost it and more in the bad weeks!).

Ginny, thanks for all your advice hun, but my gut instinct tells me that he's not allergic to dairy. I could be wrong.... but we did have him dairy free until 12 months, and it didn't make a difference. Part of why I did start to introduce dairy was because cheese was the only thing he wanted to willingly eat (I wasn't giving him it before but he saw his brother eating it) and I didn't want him to hate all foods. I gradually introduced dairy in his diet - first with 1oz diary, and 5oz neocate and gradually increased the proportions over 4 months. It's not had a negative impact.

Hope you and your little ones have great weekends, and I will update more next week.
x

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Permalink Reply by Wendy Marsh on September 13, 2009 at 8:07

Marmum

Hi, it's great to hear your little one is doing so well I hope he has put on loads of weight this week and I also hope he keeps eating this week I shall have my fingers crossed. 10oz of milk is fab, it would be a dream for Harry to drink that much and he is much much larger than your little one although his system is younger so maybe he wouldn't drink that much.

Harry is my second, I have an older boy as well but he didn't have reflux and drank milk until it came out of his ears virtually (he still does!) and he slept through at 5 weeks so this is all a bit of a shock to the system, although H is better with solids than his older brother was. My mum and dad have had them both this weekend as I was so desperate for some sleep. I took him off of fruit on Friday and the good news is that he has now reverted to only waking once in the night instead of every 2 hours. On Friday he also had a 2½ hour nap for the first time ever but it appears to have been a one off at present. I am going to start writing down what he eats and what he sleeps this week to see if I can see any patterns as I can't remember what happened when.

The Paed should have my GP's letter about further meds by tomorrow so I am going to try ringing his secretary to see if I can sweet talk her into a decision sooner rather than later but I do feel much more in control having had some sleep.

I live in Thetford in Norfolk but anywhere within a 20 mile or so radius of there is fine if your lady can give me a name of someone it may be worth a go, I know a couple of good Homeopath's in this area but I don't know if they do babies and I expect it is a bit like Osteopathy and quite specilised.

Although our little ones seem very different (H is very big for his age) we seem to be quite similar in approach, I work alot on my instincts and would always try alternative medicine first and my impression is that you are much the same, forgive me if I am wrong.

Look forward to seeing how you progress this week and I have everything crossed for you.

Wendy x

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Permalink Reply by Ginny S on September 17, 2009 at 17:00

Hi Marmum

I really want to talk to you! Please email me and I will give you my number. You say your little one slept between 6 and 11 months and then you added dairy in slowly from 12 months but without improvement or deteriotation. I know from my kids that they did not sleep when they were eating offending foods. Rory was easy to diagnose as he just got horrible diahrroea from foods and as soon as I took him off things it all stopped. But the other benefit was that he slept! For my kids wheat and gluten in particular are very bad. Stella was much more difficult as she just would not eat anything so I couldn't establish was what going on. I kept her on dairy for a year because it was the only thing she would drink and I felt it was better than nothing. However, when I removed the culprit (dairy, wheat, gluten and soy) she started to eat, so drinking not an issue. Now she drinks rice milk and even some juice!

Stella was also born on the 50th percentile for both weight and height. by three months she had gone off the chat for her weight and her height was plummeting. I managed to get her back on the chart, just, for her weight and she has always been around 2nd percentile. But her height got worse and wose and appraently that is the thing they worry about as it means their bones aren't growing properly. It is also a sign of food intolerance if height is affected (Great Ormaond Street told me this). She is now on 30th for weight!!! and 60th for height. Her weight started to go up about four or ive months ago once she was off all the offending foods.

Dr Thomson is rather competitive with Dr Shah ... personally I think Dr Shah the only one who has a grip on all of this. could you afford one appointment with him? I think he would help you. xx

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Permalink Reply by marmum on September 19, 2009 at 11:25

Isn't it funny how I now love both of you and don't even know you?!!

We've had a roller coaster week with Liam. Monday morning was 'weigh day' and he'd put on 400g!!!!!!!!!! (The rest of that previous week had also been good and we really had a lovely tempered boy). He has NEVER put on this much in a week. I took him with my mum to Mc Donald's for lunch as a treat (fatty food and all that), we came home he drank a little milk and then went off to bed for nap time. Things went downhill from there. He woke up screaming in pain, vommitted and meanwhile I had to pick up the other from school. he vommitted in the car everywhere, and was inconsolable for basically 1 hour (never had this before). He's had a cheeseburger before so it was all really strange. Called the homeopath and she gave me some different remedies. On tuesday the vommitting had stopped but he had a temperature which basically we couldn't get down until thursday despite trying different remedies. In the end I did resort back to nurofen and calpol. Yesterday was the first day we had with no pain and no temp.
We're still not sure what the problem was, and to be fair I was expecting this week to be a bad week. The homeopath reckons it could be a 'detox' reaction to the treatment - she had forwarned me about this and it's written in all the booklets about homeopathy. Unsurprisingly he hasn't eaten much this week, slept REALLY badly, but been ok with his milk. It's been so bad this week that my mum came to stay as I work from tues-fri. I'm interested to see what's happenned to his weight, but will wait until Monday.....

Ginny, I will email you hun so that we can catch up. We've agreed with Dr Thomson about an endoscopy in a couple of months, but in the meantime I want to give homeopathy a proper chance, esp now that in the good week he put on so much. I will be thinking about Dr Shah too. It realy is so nice to hear about Stella - is she sleeping through? Do they think the intolerance is something she will grow out of and if so when?

Wendy, how is Harry? Did you get the meds sorted? Amongst all the chaos this week, I'd forgotten to ask the homeopath about a contact, but I promise you I will. From my experience so far with it, we were given 2 remedies intially. The first remedy worked beautifully, the second was ok. The problems started when he got ill as we couldn't find an effective remedy for him. She had warned me though that as we were a complicated case, it could take a while to crack.... I haven't given up yet and remain open minded.....

Speak to you both soon, and will let you know the result of Monday's weigh in! This really feels like a soap opera to me at the moment!

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Permalink Reply by Wendy Marsh on September 19, 2009 at 21:39

My life feels a bit like a soap opera this week to considering what I had to go through to finally get some medication, eventually ended up speaking to the Pead directly on Monday as the GP's hadn't even typed the letter, he told me to get them to prescribe Omeprazole and when I finally found the one chemist that had it in stock it has made a massive difference, for the first time in 20 weeks the screaming has stopped. Even after two doses the Osteopath said he felt the acid heartburn was less than last week. The pead wants us to keep him on it for 4 - 6 weeks and then try to take it out again and see what happens. I am just so glad it has worked as we have his Christening tomorrow and I was dreading him screaming all the way through it!

I completely understand that you forgot to ask about a homepath contact you had more than enough on your mind so when ever you get the chance is fine.

My eldest son, who doesn't have reflux, had a strange thing a couple of weeks ago with a high temp for 3 days he then had a bad bout of diahorrea (thats probably spelt wrong) and it went the docs just said he must have picked up a virus and it is the body's way of clearing it out, fingers crossed it has not made too much difference to your lo's weight on Monday but I await the next episode with interest.

Take care of yourself.

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Permalink Reply by marmum on November 12, 2009 at 20:59

2 more months on and here's the latest in our saga......

We continued with the homeopathy for another week or so but when the week after he got croup, I thought I was going to lose it..... Long story short I went as an emergency patient to Dr Thomson who went from doing nothing to doing a lot. My little one was put on anti biotics (there went the homeopathy out the window for the time being) and will be on it for the WHOLE of winter (had never heard of this before), sent for a barium test, ph study, endoscopy and limited colonoscopy.

He is now 19 months old and we got the results this week. He has a very low immune system and inflammation throughout his digestive system probably caused by gut allergies. We're not sure if the low immunity is causing the sensitivity to allergy or whether the allergy sensitivity is causing the low immunity. Either way the last 6 weeks while he's been on the anti B's we've had a significant improvement in the fact that he hasn't got ill every other week (only once in that 6 week period), and therefore has put on a small amount of weight. Dr Thomson's wants us to reduce the dairy and ultimately get him off it but is worried about taking him fully off dairy straightaway as that's basically all that he's consuming and if we did that he would lose weight dramatically. We need to see a paedatric dietician - I remember seeing a post by someone talking about a great lady in London? We've seen someone before but I'd like to try someone else if there are any recommendations?

Ginny/Wendy, I hope you're both still around as I'd really love to catch up with you both and hear how you both and little ones are doing......

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Permalink Reply by Wendy Marsh on November 15, 2009 at 12:20

Just wanted to say I am still around but haven't got time to update you in full at the moment but will be back to catch up, glad to hear you are getting somewhere at last.

W x

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