Mumtotwo

Hi,

Sorry to hear that you've lost faith in your paediatrician. I know the feeling, often I feel like I know more about my sons condition than the health professionals.

Where are you based? How old is your beautiful little girl now?

My son has just turned one. I'm afraid I don't have the answers you were maybe hoping for on tongue size.

All the stuff I've read over the past 18 months or so suggests that like the overgrowth, no one really knows or can predict what's going to happen.

But there is a specialist clinic at Great Ormond Street Hospital in London. It's a macroglossia (large tongue) in Beckwith-Weidemann Syndrome clinic. It's run by speech and language therapy, but with surgeons and orthodontic involvement at the same time. So that the different disciplines can look at the child and work out the best way to help.

We haven't seen them yet, we are due to go in March, but I'm hopeful they can help. They're such a specialist clinic, but have seen a couple of hundred children with these symptoms, as it's rare it's a big hope they may know what to do.

My son doesn't have any developmental issues aside from his feeding. So sorry I'm not able to help with that.

The best advice I can give you is to use sites like this, or to search online for BWS and whatever symptom you're interested in, there's lots of shared experiences and clinic papers etc out there. Just

josh1014

My son with BWS is named Joshua. He is now eight years old and we chose to have tongue reduction surgery at 11months. Children's hospital doctors say the child will "grow into" their tongues. Our experience for his first 11 months of life was so DIFFICULT. I'm glad we decided to trust the maxillofacial surgeon and get the reduction. Joshua's airway was 90% blocked. He turned blue several times an hour. His blocked airway would trigger asthma symptoms and changes in his heart rate. His oxygen levels would drop as well. It was NO COMFORT to hear from the geneticists that he would "grow into" his tongue. It wasn't worth the risk to wait it out and see if by chance he would. His tongue was a bit larger and wider than your daughters. The doctor corrected his omphalocele at the same time and that has turned out perfect. Now that he is eight, we are experiencing some hip and spine difficulties with one leg growing more than the other. The plan to do a surgery on the growth plate at his knee when he is 14. (Hemihypertrophy) We've also needed to get some help with impulse behaviors.

BigSissy45 in reply to josh1014

I have been living with BWS & hemihypertrophy since 1969 & my drs did my 1st bone removal surgery at 2 yrs old! They took 2" of bone several times as I grew up & them did the growth plate surgery on my knee at 14 or 15! I am 45 yrs old & I can still walk! I developed a limp in the past 5 or 6 years, but I can walk! The surgeries also lessened the issues with my back.

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hroussel in reply to BigSissy45

It's nice to hear from those who grew up with BWS!

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Papymed08 in reply to josh1014

Wow so happy for your child can you give some information about tongue reduction because my got the same problem he got BWS is 6 years now but he's pediatrician said the can't do nothing about his tongue. I really need help for him

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Songbird63Administrator

So sorry you've had such a difficult time. There is generally no link with developmental delay in BWS unless the child had very low blood sugar that wasn't treated and caused seizures. It was untreated hypoglycemia that caused developmental delay in the past and that is why old information on BWS links it with developmental delay. Tongue size generally doesn't get any smaller and sometimes it gets bigger. Sometimes as children get older they learn to accommodate their tongues if the macoglossia is very mild, but they may then have orthodontic or jaw issues. Looking at the pictures of your daughter I would recommend a referral to a specialist craniofacial centre for their assessment re tongue reduction surgery. If you are in the UK GOSH is the national centre for macroglossia in BWS. They operated on my son at 20 months. He is now nearly 14 and doing very well. His macorglossia wasnt severe but he still benefited hugely from the surgery...clearer speech, less drooling, better breathing and he looked more normal. If you are not in the UK then you need to go to a paediatric specialist craniofacial centre. Take a look at our website for more info on BWS and also this forum. Please ask any questions and we will try our best to help. Take care x

BWS-Sh in reply to Songbird63

It's really a stressful time. My son has got macroglossia but the docs couldn't establish BWS in his case. His tongue is fairly large and he is 5 months old now. Our consultant told us that docs at GOSH wouldn't accept the referral before 6 months. So we need to wait.

Also as BWS is not established in his case and they have no explanation as why the tongue is large, I wonder if GOSH will take up his case.

We are very stressed and don't know what to do.

Any advice would be really helpful

Thanks

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Songbird63Administrator in reply to BWS-Sh

Today I've just been to a meeting with the macroglossia team at GOSH so can give you the latest info! Yes they generally don't take referrals before 6 months as the tongue isn't regarded to have a stable size before then.. unless of course there are major breathing issues etc. The surgery is usually carried out between 12 and 24 months but good outcomes are also achieved after this. I also met with the geneticist there today too who tells me that currently about 20% of BWS cases cannot be diagnosed by the genetic test and so diagnosis is a combination of clinical features and genetic testing. If the clinical features are enough to diagnose BWS they they can accept him, but the service is only funded for macroglossia in BWS not any other cause. So it probably depends of whether your son has other features of BWS - I think they need to have three of the major features (see our website for these). I know it can be very stressful waiting to know whether you need/can have/should have surgery but be reassured that, if the surgery is needed, GOSH will do it at the correct time and there is no "damage" or increased risks by not having the surgery immediately at this young age. They are very experienced with this. Please come back to me with any further questions.

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BWS-Sh in reply to Songbird63

Thanks for the reply.

It seems that my son only has long tongue and no other features to establish BWS. That's what our consultant told us. We are meeting her on 20th feb.

At this stage we just want a specialist to look at him and recommend what needs to be done.

Thanks

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Xen76

I can understand how you feel. Our experience with the pediatricians is that we have to work with them because we know more about BWS than they do but they will be critical in helping you with the regular AFP tests and sonograms. Songbird is correct about the developmental delays info. My son had tongue reduction at 8 months even though his macroglossia was mild. The decision was made because he has a slight forward lower jaw that hopefully will correct itself with time. Our decision was made to avoid future jaw surgery. We went to Dr. Marsh in the USA. He specializes in BWS.

Research as much information as you can and get the best support from good doctors. As Songbird recommended to me, enjoy your child as much as you can. We are special and unique in our own way. Hope all goes well. Take care

DanaSue in reply to Xen76

I am in the US and am going to try to get a flight to see Dr. Marsh before he retires!

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hroussel in reply to Xen76

We are looking at a tongue reduction in the very near future. What was the recovery like? I'm so scared. My boy is only 3 months. ;(

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Amh22 in reply to Xen76

Hi, I have a 2 months baby with BWS. Please can you send me the information of Dr. Marsh. I live in TX, USA. I am looking for Doctors specialized in WBS, but I couldn't.

Thanks

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Xen76 in reply to Amh22

Hi, I think Dr. Marsh retired last month but the practice is still there under another Dr. They are in Missouri and below is the link with more information

kidsplasticsurgery.org/about/

Also, I think there is another Dr. Trained by Dr. Marsh in Miami, FL.

Any other questions, please let me know .

Good luck with everything!

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Amh22 in reply to Xen76

Thanks

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Xen76 in reply to Amh22

All the staff there are very knowledgable about BWS. Any other questions, let me know.

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momandjeff

Hi Josh...I know what you're going. My son was born with BWS in 1974. His characteristics were classic BWS. DO NOT listen to doctors tell you that your child will grow into the tongue size. Remember, the tongue is a muscle & it will grow. My son was diagnosed during birth by my most wonderful pediatrician. We researched & researched & made many visits to many "specialists". They would say "never heard of BWS". Sooo frustrating. We have to do something for our child! Then, we heard of a plastic surgeon, Dr. Arthur Howell, who actually wrote studies on BWS specifically tongue reduction. He happened to be coming to Milwaukee, WI to do an emergency micro hand surgical procedure at Milwaukee Children's Hospital. We took our son to see him. Our son was 2 months old. The size of our son's tongue was starting to uproot his saliva glands. Our son had a tongue reduction at 3 months of age. The doctor was unable to remove more of the thickness because of a large blood vessel. But he removed 2/3 of his tongue along the sides, tip & thickness. It made quite a difference. It took quite awhile for the swelling to subside. As our son grew he did have an underbite. We continued to see Dr. Howell for 7 years until he passed away. Here we go again...another journey to find a doctor with knowledge of BWS! Our son was seeing an orthodontist who recommended a maxillofacial specialist, Dr. David Bayer. This doctor was also a Godsend. He researched & researched & watched our son very closely as he grew. He took our son's case to other doctors from various states. This new doctor was very dedicated to our son. After seeing our son for 4 years, he had a massive heart attack in his office after hours. We were devastated again. These 2 docs were like family to us. However, a new doc moved into the practice & took over our son's well being. Dr. Robert Walloch, Maxillofacial/DDS Specialist was our man. He had all Dr Bayer's studies on our son & he worked closely with our Orthodontist. Since our son had an underbite that could potentially cause problems later on, he had to wait until our son was 21 & his jaw was fully developed before performing jaw surgery. Six hours in surgery where Dr. Walloch pushed the lower jaw back & the upper jaw forward. Four months before, our son opted to have another tongue reduction. Dr. Walloch was able to remove a lot of muscle to reduce the thickness. That made a remarkable difference. By the way, he never had a speech problem, never a problem eating, lots of drooling as a baby. Our son does have poly cystic kidneys & a pituitary tumor, but his doctors are watching him closely. What I'm saying is do your research & find a doctor that did his research on BWS, knows what he is talking about & is confident that he will do the right thing for your beautiful baby. Don't wait. One in 15,000 births are BWS babies. It is a long journey & it was a rough road with other issues involved with BWS, but I look at my boy now who is going to be 40 in April, he has a college degree, he's fit, he's VERY tall, has huge feet (I've tripped over them so many times), he has a beautiful & perfectly healthy daughter who just turned 10 & he is a handsome guy with a tender heart. If you have any further questions, please write. Your daughter is beautiful & looks like a very happy baby girl.

Pashin11 in reply to momandjeff

Reading your post helped me see that my daughter can live a normal life thank you

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hroussel in reply to momandjeff

Thrilled to hear this didn't effect his children. Are you in WI? I'm in Milwaukee, WI. We are headed to children's tomorrow to discuss options for his macroglossia. it is obstructing his airway and he isn't getting enough oxygen when he sleeps.

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Pashin11

My daughter is going to be 3 next week shehas bws she is very large even for the syndrome standards if you can call them that it effects her heart and lungs tounge mouth an most of her organes she has not had any surgeries but will most likely need them in the future her throat tissue is starting to grow closing her air way where I live there are only a hand full of doctors that even know what bws is it can be very frustrating when they tell you that your child is just over weight or that doesn't fit in to the guide lines of bws when how can there even be guide lines w as rear as it is do as much research as you can an I you don't like the answer your doc gives you get a new one just keep moving forward it will benefit your child the world over best of luck

Invesco

My daughter has BWS, and in the hospital I was told that she'd "grow into it" but further research this is not the case. We were seeing a genetic counselor as well as our pediatrician and I requested to see a Cranial Facial Dr. to get some answers on to how this will affect her. Cause no one was acting like it was anything but a characteristic. She will be having a tongue reduction surgery next month (she will be 7mo). Without he surgery he said it can affect speech, jaw and teeth formation. Waiting to long can cause more harm in the formation of jaw and teeth and having to relearn speech. So my advise is to go see a Cranial Facial Dr, and get his opinion.

BigSissy45

My name is Angus & I have been living with BWS since 1969. I have never had any delays! As a matter of fact, I've always been at or above normal. I am also VERY tall for a woman! (6'4") I was treated at Johns Hopkins Medical Center. I had at least 6 bone removal surgeries to even out the length of my legs & at least 1 surgery to place a "staple" of some kind in my knee to slow the growth of my "big" leg! All of those were done before I was 14! As far as your daughter's tongue, my advice is to get the surgery on it! You should talk to a medical professional! Mine caused me to have to take speech therapy for years because it simply did not fit in my mouth! I was able to have the tongue reduction when I was 14 or 15 & I was thrilled! My tongue caused my teeth to come in crooked & I needed braces because of it! I know JHMC & others are specializing in treating BWS. You should look around & find a specialist & talk to them! If you have any more questions that I might be able to shed some light on then PLEASE let me know!!!!! It was a long hard battle for my parents and myself, but I was an athlete for 10 years and I'm still here & I can still walk! ( with a limp, but it's still walking). The limp has only been happening for 5 or 6 years!!!

Papymed08

Sorry my dear I got a Son who is 6 year have a BWS too about the tongue yes it will be more bigger i am very sad and worrying about Son he can talk but no clearing.when we go out people stare at him every time i have to tell him close your mouth but after 5 to 10 second he is tongue is outside. One day he told me mum i can't close my mouth because my tongue is to large and big that day i crying.

rahalove

Hi Dear. At first I apologize because of my English that is not very well. I tell you about my 9 month old daughter. She was born 10 weeks early so her real corrected age is 7 month. Based on genetic test, I consulted with Genetic physician and she explained that she has minor BWS so her tongue is a bit bigger than normal and at the moment she doesn't have any breathing problem, but she chokes with liquid so I need to add thickener to her milk. She gave me a lot of hopes that she won't have any learning problem or any other major problem in the future because a part of her gene which has been affected was maternal part so the damages will be less for her.

I met a plastic surgeon for tongue reduction, but he told me wait till she will be 1 year old. It is so stressful for me because I know this surgery can have a lot of risks for her and I am not sure that we have to go through this surgery or not because all the questions about speech, etc. Which I asked him, he wasn't sure and he told me that nobody can be sure about the side effect of surgery in the future. The genetic physician told me her tongue will be fine when she will grow. If anybody has experience about tongue reduction and it's side effects please share it with me too.

Thanks.